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Noted oncologist ponders death, life, care inequities
In 2020, he published a book aimed at cancer specialists and their patients on how to die “with hope and dignity,” titled “Between Life and Death” (Penguin Random House India).
When Dr. Patel, the CEO of Carolina Blood and Cancer Care Associates in Rock Hill, S.C., became president of the Washington-based Community Oncology Alliance 2 years ago, he stepped into a leadership role in community oncology. As an advocate for health care payment reform on Capitol Hill, the South Carolina legislature, and within his own practice, Dr. Patel has long worked to eliminate disparities in U.S. cancer care.
This news organization spoke with Dr. Patel about his unusual career path.
Question: Your father had a great influence on you. Can you tell us more about him?
Answer: My dad was a hermit and a saint. He lost his dad when he was 4 years old and moved to the big city with his cousins. When he was 9 or so, he got a message saying that his mum was very ill. So, he and his cousin raised some money, got a doctor and one of those old, rugged jeeps, and they started driving to the village, but rains had destroyed the road. So, without penicillin, his mum died of pneumonia.
He felt that roads and doctor access were the two big factors that could have saved her life. He eventually became the Superintending Engineer for four districts in Gujarat State, building roads connecting every village, but he never gave up his simplistic, minimalist life.
When I was in elementary school, every other weekend my dad would literally dump me at the Mahatma Gandhi Ashram and come back in 2 hours. So, I’m looking at Gandhi’s cabinets, his pictures, reading about his life. So, my formative years were born in that.
Q: I read that you were intending to become an engineer and join the space race. How did your father nudge you toward medicine?
A: When I was 9 years old, my favorite movie hero died of cancer. To comfort me, my father inserted the idea into my brain: When you grow up, you can become a doctor to cure cancer. So, when I finished high school, I was 24th in the state and had an option to go to the space school in India. On the day when I was going for the interview, I could see tears in my father’s eyes, and he said, You know what, boy? I thought you’re going to become a doctor and cure cancer. So, to honor him, I went to med school instead.
Q: I understand that your father also triggered your interest in photography?
A: I started photographing Kutchi tribal people in 1977, after I bought a camera from a famous architect [Hasmukh Patel], while traveling with my dad. And then my dad bought me a motorcycle, so I started riding myself. From the time I entered med school in 1978 until I finished my residency in 1987, I made several trips following Kutchi migrant families and livestock. They leave their homeland in Kutch [district] during summer in search of grass and water to keep their livestock alive and walk across the state from the desert of Kutch all the way to central Gujarat until monsoon begins. Then they return, only to resume the journey next year. I would catch them along their journey, would talk to them, drink tea and eat millet crepes with them.
In 1984, between Dr. Patel’s medical school and residency, the Lions Club in his hometown, Ahmedabad, India, sponsored him and three buddies to document people and wildlife in Gujarat state. Traveling by motorcycle, the four friends stayed for free with local families by knocking on doors and explaining that they were medical students. Dr. Patel’s photographs were exhibited by the Lions Club of Ahmedabad and at India’s top art institution, the Lalit Kala gallery.
In the 3rd year of his internal-medicine residency in Bombay (now Mumbai), Dr. Patel approached a national newspaper, The Indian Express, for work. He was immediately sent on assignment to cover a cholera epidemic and filed his story and photographs the following day. He worked as a photojournalist and subeditor for a year.
Q: Among all your thousands of pictures, do you have a favorite?
A: There were two photos of Kutchi people that touched me. There was one photo of a lady. All of her worldly belongings were in the picture and a smile on her face showed that we don’t need so many things to be happy. The second photo is of an elderly lady shifting her water pan on her head to a younger family member. And a little girl looks up with a look of curiosity: Will I be doing this when I grow up? We seek so much materialistic happiness. But when you look at the curiosity, smiles, and happiness [in these photos], you realize we could have a lot of happiness in minimalism, as well.
Q: After you finished your residency in Ahmedabad, how did you get started in oncology?
A: In 1986, Ahmedabad City and Gujarat State did not have structured training programs in oncology, so I went to Bombay [Mumbai], where Dr. B.C. Mehta, a true legend and pioneer in India, had started hematology-oncology training. I was a post-doc research fellow with him for a little over a year but when I started seeing patients, I had to answer to myself, Am I doing everything I can to help these people? I saw that the U.K. had one of the best training programs in hem malignancy, so I started applying. Then something happened that was almost like a miracle.
In April 1992, Dr. Patel was working at the Institute of Kidney Diseases in Ahmedabad. One afternoon, just as the clinic was closing for siesta, a family brought in a young girl. She had drug-induced thrombocytopenia and needed an immediate transfusion. The father offered to sell his wedding ring to pay Dr. Patel if he would supervise the treatment and stay by the girl’s side. Dr. Patel told the man to keep his ring, then he remained in the office with the child. At 4 p.m., the office phone rang. It was Dr. H.K. Parikh, an eminent British physician who was wintering in India and needed to make a medical appointment for his wife. On a normal day, Dr. Patel would have missed the call.
“This is how I got to meet Dr. Parikh, out of the blue,” said Dr. Patel. “His wife came to the office for 6 weeks and after 6 weeks, he said, You’re a smart guy; you should come to England. That was in April. I sent a resume and all the usual paperwork. On July 16, 1992, at 2 in the morning, I got a call from the U.K. saying, Your job is confirmed. I’m going to fax your appointment through the Royal College of Physicians, and you’re coming to Manchester to work with us. I’d been sponsored by the Overseas Doctors Training Program.
“So, it turns out that if I’d declined to see that patient and declined to stay in my clinic that afternoon, if I’d declined to see this doctor’s wife, I would never have been in the U.K. And that opened up the doors for me. I like that story because I’ve found that standing up for people who do not have a voice, who do not have hope, always leads to what is destined for me.”
Q: After working as a registrar in the United Kingdom 4 years, you found yourself in the United States and, once again, had to train as an internist. What was new about U.S. oncology?
A: I took 3 years to get recertified in Jamaica Hospital in Queens, then became a fellow in hematology-oncology at the Thomas Jefferson in Philadelphia. My U.K. training was all based on hematological malignancy. In the United States, I shifted into solid tumors.
Q: You have a long history of advocating for affordable oncology at the community, state, and federal level, and you recently launched a disparities initiative in your center called NOLA (No One Left Alone). What was the trigger for NOLA?
A: In the spring of 2020, when we started seeing the COVID surge and the difference in mortality rate between the multiple races, at the same time I saw the AACR [American Association for Cancer Research] 2020 disparity report showing that 34% of cancer deaths are preventable – one in three – if we took care of disparities. The same year, the Community Oncology Alliance asked me to become the president. So, I felt that there is something herding me, leading me, to this position. Eighty percent of cancer patients are treated in community clinics like ours. It put the onus on me to do something.
I learned from Gandhi that I cannot depend on government, I cannot depend on the policy, I have to act myself.
I said, I would not worry about making money, I would rather lose funding on this. So, we started. I read 400+ papers; I spent over 1,000 hours reading about disparities. And I realized that it’s not complicated. There are five pillars to eliminate disparity: access to care for financial reasons, access to biomarker testing or precision medicine, access to social determinants of health, access to cancer screening, and trials. If we focus on these five, we can at least bring that number from 34% to 20%, if not lower.
So, we put that plan in place. I dedicated three employees whose only role is to ensure that not a single patient has to take financial burden from my practice. And we showed it’s doable.
This has now become my mission for the last quarter of my life.
In 2020, Dr. Patel published a book on dying well titled “Between Life and Death.” It’s framed as a series of his conversations with a former patient, Harry Falls. Harry wanted to understand death better, so Dr. Patel narrated five patient stories, drawing the threads together to help Harry face the inevitable. Dr. Patel now uses a similar approach to train clinicians on having meaningful end-of-life conversations with patients.
Q: Why did you feel the need to write a book about dying?
A: The more I’ve witnessed, the more I’m convinced that there are things that we don’t know about this process, which needs to be explored much more. However, I do feel that there’s a power within all of us to steer the process of leaving this world.
Before I sat down with Harry, I loved to counsel patients, but I didn’t have any structural ideas. It was Harry himself who told me that I now had a simple way to explain dying to a much larger audience.
Q: What is your secret for fitting everything into your life?
A: I’ll tell you, it’s very simple. If I put my soul, heart, mind, actions, and language on the one plane and don’t let my brain and conditioning influence my choices, then I live in the moment. Whenever I let my conditioned mind take all the decisions, those are crooked, because you know, we’re selfish creatures – we can use what we call the convenient lie to hide inconvenient truth. And I try not to do that. I mean, it’s been a journey. It didn’t come overnight. I learned. And I feel that over all these years, the only thing that rewarded me, that opened the door of where I am today, was pure, selfless process, whether it’s the act of talking, speaking, or doing.
In 2020, he published a book aimed at cancer specialists and their patients on how to die “with hope and dignity,” titled “Between Life and Death” (Penguin Random House India).
When Dr. Patel, the CEO of Carolina Blood and Cancer Care Associates in Rock Hill, S.C., became president of the Washington-based Community Oncology Alliance 2 years ago, he stepped into a leadership role in community oncology. As an advocate for health care payment reform on Capitol Hill, the South Carolina legislature, and within his own practice, Dr. Patel has long worked to eliminate disparities in U.S. cancer care.
This news organization spoke with Dr. Patel about his unusual career path.
Question: Your father had a great influence on you. Can you tell us more about him?
Answer: My dad was a hermit and a saint. He lost his dad when he was 4 years old and moved to the big city with his cousins. When he was 9 or so, he got a message saying that his mum was very ill. So, he and his cousin raised some money, got a doctor and one of those old, rugged jeeps, and they started driving to the village, but rains had destroyed the road. So, without penicillin, his mum died of pneumonia.
He felt that roads and doctor access were the two big factors that could have saved her life. He eventually became the Superintending Engineer for four districts in Gujarat State, building roads connecting every village, but he never gave up his simplistic, minimalist life.
When I was in elementary school, every other weekend my dad would literally dump me at the Mahatma Gandhi Ashram and come back in 2 hours. So, I’m looking at Gandhi’s cabinets, his pictures, reading about his life. So, my formative years were born in that.
Q: I read that you were intending to become an engineer and join the space race. How did your father nudge you toward medicine?
A: When I was 9 years old, my favorite movie hero died of cancer. To comfort me, my father inserted the idea into my brain: When you grow up, you can become a doctor to cure cancer. So, when I finished high school, I was 24th in the state and had an option to go to the space school in India. On the day when I was going for the interview, I could see tears in my father’s eyes, and he said, You know what, boy? I thought you’re going to become a doctor and cure cancer. So, to honor him, I went to med school instead.
Q: I understand that your father also triggered your interest in photography?
A: I started photographing Kutchi tribal people in 1977, after I bought a camera from a famous architect [Hasmukh Patel], while traveling with my dad. And then my dad bought me a motorcycle, so I started riding myself. From the time I entered med school in 1978 until I finished my residency in 1987, I made several trips following Kutchi migrant families and livestock. They leave their homeland in Kutch [district] during summer in search of grass and water to keep their livestock alive and walk across the state from the desert of Kutch all the way to central Gujarat until monsoon begins. Then they return, only to resume the journey next year. I would catch them along their journey, would talk to them, drink tea and eat millet crepes with them.
In 1984, between Dr. Patel’s medical school and residency, the Lions Club in his hometown, Ahmedabad, India, sponsored him and three buddies to document people and wildlife in Gujarat state. Traveling by motorcycle, the four friends stayed for free with local families by knocking on doors and explaining that they were medical students. Dr. Patel’s photographs were exhibited by the Lions Club of Ahmedabad and at India’s top art institution, the Lalit Kala gallery.
In the 3rd year of his internal-medicine residency in Bombay (now Mumbai), Dr. Patel approached a national newspaper, The Indian Express, for work. He was immediately sent on assignment to cover a cholera epidemic and filed his story and photographs the following day. He worked as a photojournalist and subeditor for a year.
Q: Among all your thousands of pictures, do you have a favorite?
A: There were two photos of Kutchi people that touched me. There was one photo of a lady. All of her worldly belongings were in the picture and a smile on her face showed that we don’t need so many things to be happy. The second photo is of an elderly lady shifting her water pan on her head to a younger family member. And a little girl looks up with a look of curiosity: Will I be doing this when I grow up? We seek so much materialistic happiness. But when you look at the curiosity, smiles, and happiness [in these photos], you realize we could have a lot of happiness in minimalism, as well.
Q: After you finished your residency in Ahmedabad, how did you get started in oncology?
A: In 1986, Ahmedabad City and Gujarat State did not have structured training programs in oncology, so I went to Bombay [Mumbai], where Dr. B.C. Mehta, a true legend and pioneer in India, had started hematology-oncology training. I was a post-doc research fellow with him for a little over a year but when I started seeing patients, I had to answer to myself, Am I doing everything I can to help these people? I saw that the U.K. had one of the best training programs in hem malignancy, so I started applying. Then something happened that was almost like a miracle.
In April 1992, Dr. Patel was working at the Institute of Kidney Diseases in Ahmedabad. One afternoon, just as the clinic was closing for siesta, a family brought in a young girl. She had drug-induced thrombocytopenia and needed an immediate transfusion. The father offered to sell his wedding ring to pay Dr. Patel if he would supervise the treatment and stay by the girl’s side. Dr. Patel told the man to keep his ring, then he remained in the office with the child. At 4 p.m., the office phone rang. It was Dr. H.K. Parikh, an eminent British physician who was wintering in India and needed to make a medical appointment for his wife. On a normal day, Dr. Patel would have missed the call.
“This is how I got to meet Dr. Parikh, out of the blue,” said Dr. Patel. “His wife came to the office for 6 weeks and after 6 weeks, he said, You’re a smart guy; you should come to England. That was in April. I sent a resume and all the usual paperwork. On July 16, 1992, at 2 in the morning, I got a call from the U.K. saying, Your job is confirmed. I’m going to fax your appointment through the Royal College of Physicians, and you’re coming to Manchester to work with us. I’d been sponsored by the Overseas Doctors Training Program.
“So, it turns out that if I’d declined to see that patient and declined to stay in my clinic that afternoon, if I’d declined to see this doctor’s wife, I would never have been in the U.K. And that opened up the doors for me. I like that story because I’ve found that standing up for people who do not have a voice, who do not have hope, always leads to what is destined for me.”
Q: After working as a registrar in the United Kingdom 4 years, you found yourself in the United States and, once again, had to train as an internist. What was new about U.S. oncology?
A: I took 3 years to get recertified in Jamaica Hospital in Queens, then became a fellow in hematology-oncology at the Thomas Jefferson in Philadelphia. My U.K. training was all based on hematological malignancy. In the United States, I shifted into solid tumors.
Q: You have a long history of advocating for affordable oncology at the community, state, and federal level, and you recently launched a disparities initiative in your center called NOLA (No One Left Alone). What was the trigger for NOLA?
A: In the spring of 2020, when we started seeing the COVID surge and the difference in mortality rate between the multiple races, at the same time I saw the AACR [American Association for Cancer Research] 2020 disparity report showing that 34% of cancer deaths are preventable – one in three – if we took care of disparities. The same year, the Community Oncology Alliance asked me to become the president. So, I felt that there is something herding me, leading me, to this position. Eighty percent of cancer patients are treated in community clinics like ours. It put the onus on me to do something.
I learned from Gandhi that I cannot depend on government, I cannot depend on the policy, I have to act myself.
I said, I would not worry about making money, I would rather lose funding on this. So, we started. I read 400+ papers; I spent over 1,000 hours reading about disparities. And I realized that it’s not complicated. There are five pillars to eliminate disparity: access to care for financial reasons, access to biomarker testing or precision medicine, access to social determinants of health, access to cancer screening, and trials. If we focus on these five, we can at least bring that number from 34% to 20%, if not lower.
So, we put that plan in place. I dedicated three employees whose only role is to ensure that not a single patient has to take financial burden from my practice. And we showed it’s doable.
This has now become my mission for the last quarter of my life.
In 2020, Dr. Patel published a book on dying well titled “Between Life and Death.” It’s framed as a series of his conversations with a former patient, Harry Falls. Harry wanted to understand death better, so Dr. Patel narrated five patient stories, drawing the threads together to help Harry face the inevitable. Dr. Patel now uses a similar approach to train clinicians on having meaningful end-of-life conversations with patients.
Q: Why did you feel the need to write a book about dying?
A: The more I’ve witnessed, the more I’m convinced that there are things that we don’t know about this process, which needs to be explored much more. However, I do feel that there’s a power within all of us to steer the process of leaving this world.
Before I sat down with Harry, I loved to counsel patients, but I didn’t have any structural ideas. It was Harry himself who told me that I now had a simple way to explain dying to a much larger audience.
Q: What is your secret for fitting everything into your life?
A: I’ll tell you, it’s very simple. If I put my soul, heart, mind, actions, and language on the one plane and don’t let my brain and conditioning influence my choices, then I live in the moment. Whenever I let my conditioned mind take all the decisions, those are crooked, because you know, we’re selfish creatures – we can use what we call the convenient lie to hide inconvenient truth. And I try not to do that. I mean, it’s been a journey. It didn’t come overnight. I learned. And I feel that over all these years, the only thing that rewarded me, that opened the door of where I am today, was pure, selfless process, whether it’s the act of talking, speaking, or doing.
In 2020, he published a book aimed at cancer specialists and their patients on how to die “with hope and dignity,” titled “Between Life and Death” (Penguin Random House India).
When Dr. Patel, the CEO of Carolina Blood and Cancer Care Associates in Rock Hill, S.C., became president of the Washington-based Community Oncology Alliance 2 years ago, he stepped into a leadership role in community oncology. As an advocate for health care payment reform on Capitol Hill, the South Carolina legislature, and within his own practice, Dr. Patel has long worked to eliminate disparities in U.S. cancer care.
This news organization spoke with Dr. Patel about his unusual career path.
Question: Your father had a great influence on you. Can you tell us more about him?
Answer: My dad was a hermit and a saint. He lost his dad when he was 4 years old and moved to the big city with his cousins. When he was 9 or so, he got a message saying that his mum was very ill. So, he and his cousin raised some money, got a doctor and one of those old, rugged jeeps, and they started driving to the village, but rains had destroyed the road. So, without penicillin, his mum died of pneumonia.
He felt that roads and doctor access were the two big factors that could have saved her life. He eventually became the Superintending Engineer for four districts in Gujarat State, building roads connecting every village, but he never gave up his simplistic, minimalist life.
When I was in elementary school, every other weekend my dad would literally dump me at the Mahatma Gandhi Ashram and come back in 2 hours. So, I’m looking at Gandhi’s cabinets, his pictures, reading about his life. So, my formative years were born in that.
Q: I read that you were intending to become an engineer and join the space race. How did your father nudge you toward medicine?
A: When I was 9 years old, my favorite movie hero died of cancer. To comfort me, my father inserted the idea into my brain: When you grow up, you can become a doctor to cure cancer. So, when I finished high school, I was 24th in the state and had an option to go to the space school in India. On the day when I was going for the interview, I could see tears in my father’s eyes, and he said, You know what, boy? I thought you’re going to become a doctor and cure cancer. So, to honor him, I went to med school instead.
Q: I understand that your father also triggered your interest in photography?
A: I started photographing Kutchi tribal people in 1977, after I bought a camera from a famous architect [Hasmukh Patel], while traveling with my dad. And then my dad bought me a motorcycle, so I started riding myself. From the time I entered med school in 1978 until I finished my residency in 1987, I made several trips following Kutchi migrant families and livestock. They leave their homeland in Kutch [district] during summer in search of grass and water to keep their livestock alive and walk across the state from the desert of Kutch all the way to central Gujarat until monsoon begins. Then they return, only to resume the journey next year. I would catch them along their journey, would talk to them, drink tea and eat millet crepes with them.
In 1984, between Dr. Patel’s medical school and residency, the Lions Club in his hometown, Ahmedabad, India, sponsored him and three buddies to document people and wildlife in Gujarat state. Traveling by motorcycle, the four friends stayed for free with local families by knocking on doors and explaining that they were medical students. Dr. Patel’s photographs were exhibited by the Lions Club of Ahmedabad and at India’s top art institution, the Lalit Kala gallery.
In the 3rd year of his internal-medicine residency in Bombay (now Mumbai), Dr. Patel approached a national newspaper, The Indian Express, for work. He was immediately sent on assignment to cover a cholera epidemic and filed his story and photographs the following day. He worked as a photojournalist and subeditor for a year.
Q: Among all your thousands of pictures, do you have a favorite?
A: There were two photos of Kutchi people that touched me. There was one photo of a lady. All of her worldly belongings were in the picture and a smile on her face showed that we don’t need so many things to be happy. The second photo is of an elderly lady shifting her water pan on her head to a younger family member. And a little girl looks up with a look of curiosity: Will I be doing this when I grow up? We seek so much materialistic happiness. But when you look at the curiosity, smiles, and happiness [in these photos], you realize we could have a lot of happiness in minimalism, as well.
Q: After you finished your residency in Ahmedabad, how did you get started in oncology?
A: In 1986, Ahmedabad City and Gujarat State did not have structured training programs in oncology, so I went to Bombay [Mumbai], where Dr. B.C. Mehta, a true legend and pioneer in India, had started hematology-oncology training. I was a post-doc research fellow with him for a little over a year but when I started seeing patients, I had to answer to myself, Am I doing everything I can to help these people? I saw that the U.K. had one of the best training programs in hem malignancy, so I started applying. Then something happened that was almost like a miracle.
In April 1992, Dr. Patel was working at the Institute of Kidney Diseases in Ahmedabad. One afternoon, just as the clinic was closing for siesta, a family brought in a young girl. She had drug-induced thrombocytopenia and needed an immediate transfusion. The father offered to sell his wedding ring to pay Dr. Patel if he would supervise the treatment and stay by the girl’s side. Dr. Patel told the man to keep his ring, then he remained in the office with the child. At 4 p.m., the office phone rang. It was Dr. H.K. Parikh, an eminent British physician who was wintering in India and needed to make a medical appointment for his wife. On a normal day, Dr. Patel would have missed the call.
“This is how I got to meet Dr. Parikh, out of the blue,” said Dr. Patel. “His wife came to the office for 6 weeks and after 6 weeks, he said, You’re a smart guy; you should come to England. That was in April. I sent a resume and all the usual paperwork. On July 16, 1992, at 2 in the morning, I got a call from the U.K. saying, Your job is confirmed. I’m going to fax your appointment through the Royal College of Physicians, and you’re coming to Manchester to work with us. I’d been sponsored by the Overseas Doctors Training Program.
“So, it turns out that if I’d declined to see that patient and declined to stay in my clinic that afternoon, if I’d declined to see this doctor’s wife, I would never have been in the U.K. And that opened up the doors for me. I like that story because I’ve found that standing up for people who do not have a voice, who do not have hope, always leads to what is destined for me.”
Q: After working as a registrar in the United Kingdom 4 years, you found yourself in the United States and, once again, had to train as an internist. What was new about U.S. oncology?
A: I took 3 years to get recertified in Jamaica Hospital in Queens, then became a fellow in hematology-oncology at the Thomas Jefferson in Philadelphia. My U.K. training was all based on hematological malignancy. In the United States, I shifted into solid tumors.
Q: You have a long history of advocating for affordable oncology at the community, state, and federal level, and you recently launched a disparities initiative in your center called NOLA (No One Left Alone). What was the trigger for NOLA?
A: In the spring of 2020, when we started seeing the COVID surge and the difference in mortality rate between the multiple races, at the same time I saw the AACR [American Association for Cancer Research] 2020 disparity report showing that 34% of cancer deaths are preventable – one in three – if we took care of disparities. The same year, the Community Oncology Alliance asked me to become the president. So, I felt that there is something herding me, leading me, to this position. Eighty percent of cancer patients are treated in community clinics like ours. It put the onus on me to do something.
I learned from Gandhi that I cannot depend on government, I cannot depend on the policy, I have to act myself.
I said, I would not worry about making money, I would rather lose funding on this. So, we started. I read 400+ papers; I spent over 1,000 hours reading about disparities. And I realized that it’s not complicated. There are five pillars to eliminate disparity: access to care for financial reasons, access to biomarker testing or precision medicine, access to social determinants of health, access to cancer screening, and trials. If we focus on these five, we can at least bring that number from 34% to 20%, if not lower.
So, we put that plan in place. I dedicated three employees whose only role is to ensure that not a single patient has to take financial burden from my practice. And we showed it’s doable.
This has now become my mission for the last quarter of my life.
In 2020, Dr. Patel published a book on dying well titled “Between Life and Death.” It’s framed as a series of his conversations with a former patient, Harry Falls. Harry wanted to understand death better, so Dr. Patel narrated five patient stories, drawing the threads together to help Harry face the inevitable. Dr. Patel now uses a similar approach to train clinicians on having meaningful end-of-life conversations with patients.
Q: Why did you feel the need to write a book about dying?
A: The more I’ve witnessed, the more I’m convinced that there are things that we don’t know about this process, which needs to be explored much more. However, I do feel that there’s a power within all of us to steer the process of leaving this world.
Before I sat down with Harry, I loved to counsel patients, but I didn’t have any structural ideas. It was Harry himself who told me that I now had a simple way to explain dying to a much larger audience.
Q: What is your secret for fitting everything into your life?
A: I’ll tell you, it’s very simple. If I put my soul, heart, mind, actions, and language on the one plane and don’t let my brain and conditioning influence my choices, then I live in the moment. Whenever I let my conditioned mind take all the decisions, those are crooked, because you know, we’re selfish creatures – we can use what we call the convenient lie to hide inconvenient truth. And I try not to do that. I mean, it’s been a journey. It didn’t come overnight. I learned. And I feel that over all these years, the only thing that rewarded me, that opened the door of where I am today, was pure, selfless process, whether it’s the act of talking, speaking, or doing.
FDA OKs sodium thiosulfate injection to reduce ototoxicity risk in children with cancer
This approval makes sodium thiosulfate the first and only treatment FDA-approved in this area.
“Historically, there have been no approved treatments for preventing cisplatin-induced hearing loss,” said David R. Freyer, DO, of Children’s Hospital Los Angeles and primary investigator of one of the two trials, COG ACCL0431. The FDA’s approval “addresses an enormous unmet need for many children and young adults.”
The approval was based on safety and efficacy data from two multicenter open-label, randomized controlled phase 3 trials – SIOPEL 6 and COG ACCL0431 – comparing sodium thiosulfate plus a cisplatin-based regimen to a cisplatin-based regimen alone in pediatric patients. SIOPEL 6 included patients with standard risk hepatoblastoma, and COG ACCL0431 included pediatric patients with solid tumors.
In both studies, the incidence of hearing loss was significantly lower in the sodium thiosulfate group, compared with the cisplatin-only group. In SIOPEL 6, hearing loss of grade 1 or higher occurred in 33% of children (18 of 55) in the cisplatin–sodium thiosulfate group and 63% (29 of 46) in the cisplatin-only group, indicating a 48% lower incidence of hearing loss for those receiving sodium thiosulfate. In COG ACCL0431, hearing loss was identified in 28.6% of patients (14 of 49) receiving sodium thiosulfate, compared with 56.4% (31 of 55) in the control group, indicating a 69% lower risk for hearing loss in the sodium thiosulfate group.
The FDA reported the same overall trend but highlighted slightly different figures. In SIOPEL 6, hearing loss incidence occurred in 39% of patients (24 of 61) in the sodium thiosulfate arm versus 68% (36 of 53) in the control group; in COG ACCL0431, hearing loss incidence occurred among 44% of patients (17 of 39) in the sodium thiosulfate group versus 58% (22 of 38) in the control group.
The recommended dose is based on surface area according to body weight. Sodium thiosulfate is administered as an intravenous infusion over 15 minutes following cisplatin infusions that are 1 to 6 hours in duration.
Serious adverse reactions occurred in 40% of patients who received cisplatin–sodium thiosulfate in SIOPEL 6 and 36% of these patients in COG ACCL0431. The most common adverse reactions in the trials included vomiting, infection, nausea, decreased hemoglobin, hypernatremia, and hypokalemia.
A version of this article first appeared on Medscape.com.
This approval makes sodium thiosulfate the first and only treatment FDA-approved in this area.
“Historically, there have been no approved treatments for preventing cisplatin-induced hearing loss,” said David R. Freyer, DO, of Children’s Hospital Los Angeles and primary investigator of one of the two trials, COG ACCL0431. The FDA’s approval “addresses an enormous unmet need for many children and young adults.”
The approval was based on safety and efficacy data from two multicenter open-label, randomized controlled phase 3 trials – SIOPEL 6 and COG ACCL0431 – comparing sodium thiosulfate plus a cisplatin-based regimen to a cisplatin-based regimen alone in pediatric patients. SIOPEL 6 included patients with standard risk hepatoblastoma, and COG ACCL0431 included pediatric patients with solid tumors.
In both studies, the incidence of hearing loss was significantly lower in the sodium thiosulfate group, compared with the cisplatin-only group. In SIOPEL 6, hearing loss of grade 1 or higher occurred in 33% of children (18 of 55) in the cisplatin–sodium thiosulfate group and 63% (29 of 46) in the cisplatin-only group, indicating a 48% lower incidence of hearing loss for those receiving sodium thiosulfate. In COG ACCL0431, hearing loss was identified in 28.6% of patients (14 of 49) receiving sodium thiosulfate, compared with 56.4% (31 of 55) in the control group, indicating a 69% lower risk for hearing loss in the sodium thiosulfate group.
The FDA reported the same overall trend but highlighted slightly different figures. In SIOPEL 6, hearing loss incidence occurred in 39% of patients (24 of 61) in the sodium thiosulfate arm versus 68% (36 of 53) in the control group; in COG ACCL0431, hearing loss incidence occurred among 44% of patients (17 of 39) in the sodium thiosulfate group versus 58% (22 of 38) in the control group.
The recommended dose is based on surface area according to body weight. Sodium thiosulfate is administered as an intravenous infusion over 15 minutes following cisplatin infusions that are 1 to 6 hours in duration.
Serious adverse reactions occurred in 40% of patients who received cisplatin–sodium thiosulfate in SIOPEL 6 and 36% of these patients in COG ACCL0431. The most common adverse reactions in the trials included vomiting, infection, nausea, decreased hemoglobin, hypernatremia, and hypokalemia.
A version of this article first appeared on Medscape.com.
This approval makes sodium thiosulfate the first and only treatment FDA-approved in this area.
“Historically, there have been no approved treatments for preventing cisplatin-induced hearing loss,” said David R. Freyer, DO, of Children’s Hospital Los Angeles and primary investigator of one of the two trials, COG ACCL0431. The FDA’s approval “addresses an enormous unmet need for many children and young adults.”
The approval was based on safety and efficacy data from two multicenter open-label, randomized controlled phase 3 trials – SIOPEL 6 and COG ACCL0431 – comparing sodium thiosulfate plus a cisplatin-based regimen to a cisplatin-based regimen alone in pediatric patients. SIOPEL 6 included patients with standard risk hepatoblastoma, and COG ACCL0431 included pediatric patients with solid tumors.
In both studies, the incidence of hearing loss was significantly lower in the sodium thiosulfate group, compared with the cisplatin-only group. In SIOPEL 6, hearing loss of grade 1 or higher occurred in 33% of children (18 of 55) in the cisplatin–sodium thiosulfate group and 63% (29 of 46) in the cisplatin-only group, indicating a 48% lower incidence of hearing loss for those receiving sodium thiosulfate. In COG ACCL0431, hearing loss was identified in 28.6% of patients (14 of 49) receiving sodium thiosulfate, compared with 56.4% (31 of 55) in the control group, indicating a 69% lower risk for hearing loss in the sodium thiosulfate group.
The FDA reported the same overall trend but highlighted slightly different figures. In SIOPEL 6, hearing loss incidence occurred in 39% of patients (24 of 61) in the sodium thiosulfate arm versus 68% (36 of 53) in the control group; in COG ACCL0431, hearing loss incidence occurred among 44% of patients (17 of 39) in the sodium thiosulfate group versus 58% (22 of 38) in the control group.
The recommended dose is based on surface area according to body weight. Sodium thiosulfate is administered as an intravenous infusion over 15 minutes following cisplatin infusions that are 1 to 6 hours in duration.
Serious adverse reactions occurred in 40% of patients who received cisplatin–sodium thiosulfate in SIOPEL 6 and 36% of these patients in COG ACCL0431. The most common adverse reactions in the trials included vomiting, infection, nausea, decreased hemoglobin, hypernatremia, and hypokalemia.
A version of this article first appeared on Medscape.com.
In America, cancer patients endure debt on top of disease
RAPID CITY, S.D. – Jeni Rae Peters would make promises to herself as she lay awake nights after being diagnosed with breast cancer two years ago.
“My kids had lost so much,” said Ms. Peters, a single mom and mental health counselor. She had just adopted two girls and was fostering four other children. “I swore I wouldn’t force them to have yet another parent.”
Multiple surgeries, radiation, and chemotherapy controlled the cancer. But, despite having insurance, Ms. Peters was left with more than $30,000 of debt, threats from bill collectors, and more anxious nights thinking of her kids. “Do I pull them out of day care? Do I stop their schooling and tutoring? Do I not help them with college?” Ms. Peters asked herself. “My doctor saved my life, but my medical bills are stealing from my children’s lives.”
Cancer kills about 600,000 people in the United States every year, making it a leading cause of death. Many more survive it, because of breakthroughs in medicines and therapies.
That’s forced patients and their families to make gut-wrenching sacrifices even as they confront a grave illness, according to a KHN-NPR investigation of America’s sprawling medical debt problem. The project shows few suffer more than those with cancer.
About two-thirds of adults with health care debt who’ve had cancer themselves or in their family have cut spending on food, clothing, or other household basics, a poll conducted by KFF for this project found. About one in four have declared bankruptcy or lost their home to eviction or foreclosure.
Other research shows that patients from minority groups are more likely to experience financial hardships caused by cancer than White patients, reinforcing racial disparities that shadow the U.S. health care system.
“It’s crippling,” said Dr. Veena Shankaran, MD, an oncologist at the University of Washington, Seattle, who began studying the financial impact of cancer after seeing patients ruined by medical bills. “Even if someone survives the cancer, they often can’t shake the debt.”
Dr. Shankaran found that cancer patients were 71% more likely than Americans without the disease to have bills in collections, face tax liens and mortgage foreclosure, or experience other financial setbacks. Analyzing bankruptcy records and cancer registries in Washington state, Dr. Shankaran and other researchers also discovered that cancer patients were 2½ times as likely to declare bankruptcy as those without the disease. And those who went bankrupt were likelier to die than cancer patients who did not.
Oncologists have a name for this: “financial toxicity,” a term that echoes the intractable vomiting, life-threatening infections, and other noxious effects of chemotherapy.
“Sometimes,” Dr. Shankaran said, “it’s tough to think about what the system puts patients through.”
Cancer diagnosis upends family
At the three-bedroom home in Rapid City that Ms. Peters shares with her children and a friend, there isn’t time most days to dwell on these worries. There are ice skating lessons and driving tests and countless meals to prepare. Teenagers drift in and out, chattering about homework and tattoos and driving.
The smallest children congregate at a small kitchen table under a wall decorated with seven old telephones. (As Ms. Peters tells it, the red one is a hotline to Santa, a green one to the Grinch, and a space shuttle–shaped phone connects to astronauts orbiting the Earth.)
Ms. Peters, 44, presides cheerfully over the chaos, directing her children with snide asides and expressions of love. She watches proudly as one teenage daughter helps another with math in the living room. Later she dances with a 5-year-old to Queen under a disco ball in the entry hall.
Ms. Peters, who sports tattoos and earlier this year dyed her hair purple, never planned to have a family. In her late 30s, she wanted to do more for her adopted community, so she took in foster children, many of whom come from the nearby Pine Ridge Indian Reservation. One of her daughters had been homeless.
“Foster kids are amazing humans,” she said. “I joke I’m the most reluctant parent of the most amazing children that have ever existed. And I get to help raise these little people to be healthy and safe.”
In spring 2020, the secure world Ms. Peters had carefully tended was shattered. As the COVID pandemic spread across the country, she was diagnosed with stage 2 breast cancer.
Within weeks, she had an intravenous port inserted into her chest. Surgeons removed both her breasts, then her ovaries after tests showed she was at risk of ovarian cancer as well.
Cancer treatment today often entails a costly, debilitating march of procedures, infusions, and radiation sessions that can exhaust patients physically and emotionally. It was scary, Ms. Peters said. But she rallied her children. “We talked a lot about how they had all lost siblings or parents or other relatives,” she said. “All I had to do was lose my boobs.”
Much harder, she said, were the endless and perplexing medical bills.
There were bills from the anesthesiologists who attended her surgeries, from the hospital, and from a surgery center. For a while, the hospital stopped sending bills. Then in April, Ms. Peters got a call one morning from a bill collector saying she owed $13,000. In total, Ms. Peters estimates her medical debts now exceed $30,000.
High costs, despite insurance
Debts of that size aren’t unusual. Nationwide, about one in five indebted adults who have had cancer or have a family member who’s been sick say they owe $10,000 or more, according to the KFF poll. Those dealing with cancer are also more likely than others with health care debt to owe large sums and to say they don’t expect to ever pay them off.
This debt has been fueled in part by the advent of lifesaving therapies that also come with eye-popping price tags. The National Cancer Institute calculated the average cost of medical care and drugs tops $42,000 in the year following a cancer diagnosis. Some treatments can exceed $1 million.
Usually, most costs are covered. But patients are increasingly on the hook for large bills because of deductibles and other health plan cost sharing. The average leukemia patient with private health insurance, for example, can expect to pay more than $5,100 in the year after diagnosis, according to an analysis by the consulting firm Milliman. Even Medicare can leave seniors with huge bills. The average blood cancer patient covered by fee-for-service Medicare can expect to pay more than $17,000 out-of-pocket in the year following diagnosis, Milliman found.
Additionally, ongoing surgeries, tests, and medications can make patients pay large out-of-pocket costs year after year. Physicians and patient advocates say this cost sharing -- originally billed as a way to encourage patients to shop for care -- is devastating. “The problem is that model doesn’t work very well with cancer,” said David Eagle, MD, an oncologist at New York Cancer & Blood Specialists.
More broadly, the KHN-NPR investigation found that about 100 million people in the United States are now in debt from medical or dental bills. Poor health is among the most powerful predictors of debt, with this debt concentrated in parts of the country with the highest levels of illness.
According to the KFF poll, 6 in 10 adults with a chronic disease such as cancer, diabetes, or heart disease or with a close family member who is sick have had some kind of health care debt in the past 5 years. The poll was designed to capture not just bills patients haven’t paid, but also other borrowing used to pay for health care, such as credit cards, payment plans, and loans from friends and family.
For her part, Ms. Peters has had seven surgeries since 2020. Through it all, she had health insurance through her employers. Ms. Peters said she knew she had to keep working or would lose coverage and face even bigger bills. Like most plans, however, hers have required she pay thousands of dollars out of pocket.
Within weeks of her diagnosis, the bills rolled in. Then collectors started calling. One call came as Ms. Peters was lying in the recovery room after her double mastectomy. “I was kind of delirious, and I thought it was my kids,” she said. “It was someone asking me to pay a medical bill.”
Ms. Peters faced more bills when she switched jobs later that year and her insurance changed. The deductible and cap on her out-of-pocket costs reset.
In 2021, the deductible and out-of-pocket limit reset again, as they do every year for most health plans. So when Ms. Peters slipped on the ice and broke her wrist – a fracture likely made worse by chemotherapy that weakened her bones – she was charged thousands more.
This year has brought more surgeries and yet more bills, as her deductible and out-of-pocket limit reset again.
“I don’t even know anymore how much I owe,” Ms. Peters said. “Sometimes it feels like people just send me random bills. I don’t even know what they’re for.”
Making sacrifices
Before getting sick, Ms. Peters was earning about $60,000 a year. It was enough to provide for her children, she said, supplemented with a stipend she receives for foster care.
The family budget was always tight. Ms. Peters and her kids don’t take extravagant vacations. Ms. Peters doesn’t own her home and has next to no savings. Now, she said, they are living at the edge. “I keep praying there is a shoe fairy,” she said, joking about the demands of so many growing feet in her home.
Ms. Peters took on extra work to pay some of the bills. Five days a week, she works back-to-back shifts at both a mental health crisis center and a clinic where she counsels teenagers, some of whom are suicidal. In 2021, three friends on the East Coast paid off some of the debt.
But Ms. Peters’ credit score has tumbled below 600. And the bills pile high on the microwave in her kitchen. “I’m middle class,” she said. “Could I make payments on some of these? Yes, I suppose I could.”
That would require trade-offs. She could drop car insurance for her teenage daughter, who just got her license. Canceling ice skating for another daughter would yield an extra $60 a month. But Ms. Peters is reluctant. “Do you know what it feels like to be a foster kid and get a gold medal in ice skating? Do you know what kind of citizen they could become if they know they’re special?” she said. “There seems to be a myth that you can pay for it all. You can’t.”
Many cancer patients face difficult choices.
About 4 in 10 with debt have taken money out of a retirement, college, or other long-term savings account, the KFF poll found; about 3 in 10 have moved in with family or friends or made another change in their living situation.
Kashyap Patel, MD, chief executive of Carolina Blood and Cancer Care Associates, said the South Carolina practice has found patients turning to food banks and other charities to get by. One patient was living in his car. Dr. Patel estimated that half the patients need some kind of financial aid. Even then, many end up in debt.
The Leukemia & Lymphoma Society, which typically helps blood cancer patients navigate health insurance and find food, housing, and other nonmedical assistance, is hearing from more patients simply seeking cash to pay off debt, said Nikki Yuill, who oversees the group’s call center. “People tell us they won’t get follow-up care because they can’t take on more debt,” Ms. Yuill said, recalling one man who refused to call an ambulance even though he couldn’t get to the hospital. “It breaks your heart.”
Academic research has revealed widespread self-rationing by patients. For example, while nearly one in five people taking oral chemotherapy abandon treatment, about half stop when out-of-pocket costs exceed $2,000, according to a 2017 analysis.
Robin Yabroff, PhD, MBA, an epidemiologist at the American Cancer Society, said more research must be done to understand the lasting effects of medical debt on cancer survivors and their families. “What does it mean for a family if they have to liquidate savings or drain college funds or sell their home?” Dr. Yabroff said. “We just don’t know yet.”
As Ms. Peters put away bags of groceries in her kitchen, she conceded she doesn’t know what will happen to her family. Like many patients, she worries about how she’ll pay for tests and follow-up care if the cancer reappears.
She is still wading through collection notices in the mail and fielding calls from debt collectors. Ms. Peters told one that she was prepared to go to court and ask the judge to decide which of her children should be cut off from after-school activities to pay off the debts.
She asked another debt collector whether he had kids. “He told me that it had been my choice to get the surgery,” Ms. Peters recalled. “And I said: ‘Yeah, I guess I chose not to be dead.’ ”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
RAPID CITY, S.D. – Jeni Rae Peters would make promises to herself as she lay awake nights after being diagnosed with breast cancer two years ago.
“My kids had lost so much,” said Ms. Peters, a single mom and mental health counselor. She had just adopted two girls and was fostering four other children. “I swore I wouldn’t force them to have yet another parent.”
Multiple surgeries, radiation, and chemotherapy controlled the cancer. But, despite having insurance, Ms. Peters was left with more than $30,000 of debt, threats from bill collectors, and more anxious nights thinking of her kids. “Do I pull them out of day care? Do I stop their schooling and tutoring? Do I not help them with college?” Ms. Peters asked herself. “My doctor saved my life, but my medical bills are stealing from my children’s lives.”
Cancer kills about 600,000 people in the United States every year, making it a leading cause of death. Many more survive it, because of breakthroughs in medicines and therapies.
That’s forced patients and their families to make gut-wrenching sacrifices even as they confront a grave illness, according to a KHN-NPR investigation of America’s sprawling medical debt problem. The project shows few suffer more than those with cancer.
About two-thirds of adults with health care debt who’ve had cancer themselves or in their family have cut spending on food, clothing, or other household basics, a poll conducted by KFF for this project found. About one in four have declared bankruptcy or lost their home to eviction or foreclosure.
Other research shows that patients from minority groups are more likely to experience financial hardships caused by cancer than White patients, reinforcing racial disparities that shadow the U.S. health care system.
“It’s crippling,” said Dr. Veena Shankaran, MD, an oncologist at the University of Washington, Seattle, who began studying the financial impact of cancer after seeing patients ruined by medical bills. “Even if someone survives the cancer, they often can’t shake the debt.”
Dr. Shankaran found that cancer patients were 71% more likely than Americans without the disease to have bills in collections, face tax liens and mortgage foreclosure, or experience other financial setbacks. Analyzing bankruptcy records and cancer registries in Washington state, Dr. Shankaran and other researchers also discovered that cancer patients were 2½ times as likely to declare bankruptcy as those without the disease. And those who went bankrupt were likelier to die than cancer patients who did not.
Oncologists have a name for this: “financial toxicity,” a term that echoes the intractable vomiting, life-threatening infections, and other noxious effects of chemotherapy.
“Sometimes,” Dr. Shankaran said, “it’s tough to think about what the system puts patients through.”
Cancer diagnosis upends family
At the three-bedroom home in Rapid City that Ms. Peters shares with her children and a friend, there isn’t time most days to dwell on these worries. There are ice skating lessons and driving tests and countless meals to prepare. Teenagers drift in and out, chattering about homework and tattoos and driving.
The smallest children congregate at a small kitchen table under a wall decorated with seven old telephones. (As Ms. Peters tells it, the red one is a hotline to Santa, a green one to the Grinch, and a space shuttle–shaped phone connects to astronauts orbiting the Earth.)
Ms. Peters, 44, presides cheerfully over the chaos, directing her children with snide asides and expressions of love. She watches proudly as one teenage daughter helps another with math in the living room. Later she dances with a 5-year-old to Queen under a disco ball in the entry hall.
Ms. Peters, who sports tattoos and earlier this year dyed her hair purple, never planned to have a family. In her late 30s, she wanted to do more for her adopted community, so she took in foster children, many of whom come from the nearby Pine Ridge Indian Reservation. One of her daughters had been homeless.
“Foster kids are amazing humans,” she said. “I joke I’m the most reluctant parent of the most amazing children that have ever existed. And I get to help raise these little people to be healthy and safe.”
In spring 2020, the secure world Ms. Peters had carefully tended was shattered. As the COVID pandemic spread across the country, she was diagnosed with stage 2 breast cancer.
Within weeks, she had an intravenous port inserted into her chest. Surgeons removed both her breasts, then her ovaries after tests showed she was at risk of ovarian cancer as well.
Cancer treatment today often entails a costly, debilitating march of procedures, infusions, and radiation sessions that can exhaust patients physically and emotionally. It was scary, Ms. Peters said. But she rallied her children. “We talked a lot about how they had all lost siblings or parents or other relatives,” she said. “All I had to do was lose my boobs.”
Much harder, she said, were the endless and perplexing medical bills.
There were bills from the anesthesiologists who attended her surgeries, from the hospital, and from a surgery center. For a while, the hospital stopped sending bills. Then in April, Ms. Peters got a call one morning from a bill collector saying she owed $13,000. In total, Ms. Peters estimates her medical debts now exceed $30,000.
High costs, despite insurance
Debts of that size aren’t unusual. Nationwide, about one in five indebted adults who have had cancer or have a family member who’s been sick say they owe $10,000 or more, according to the KFF poll. Those dealing with cancer are also more likely than others with health care debt to owe large sums and to say they don’t expect to ever pay them off.
This debt has been fueled in part by the advent of lifesaving therapies that also come with eye-popping price tags. The National Cancer Institute calculated the average cost of medical care and drugs tops $42,000 in the year following a cancer diagnosis. Some treatments can exceed $1 million.
Usually, most costs are covered. But patients are increasingly on the hook for large bills because of deductibles and other health plan cost sharing. The average leukemia patient with private health insurance, for example, can expect to pay more than $5,100 in the year after diagnosis, according to an analysis by the consulting firm Milliman. Even Medicare can leave seniors with huge bills. The average blood cancer patient covered by fee-for-service Medicare can expect to pay more than $17,000 out-of-pocket in the year following diagnosis, Milliman found.
Additionally, ongoing surgeries, tests, and medications can make patients pay large out-of-pocket costs year after year. Physicians and patient advocates say this cost sharing -- originally billed as a way to encourage patients to shop for care -- is devastating. “The problem is that model doesn’t work very well with cancer,” said David Eagle, MD, an oncologist at New York Cancer & Blood Specialists.
More broadly, the KHN-NPR investigation found that about 100 million people in the United States are now in debt from medical or dental bills. Poor health is among the most powerful predictors of debt, with this debt concentrated in parts of the country with the highest levels of illness.
According to the KFF poll, 6 in 10 adults with a chronic disease such as cancer, diabetes, or heart disease or with a close family member who is sick have had some kind of health care debt in the past 5 years. The poll was designed to capture not just bills patients haven’t paid, but also other borrowing used to pay for health care, such as credit cards, payment plans, and loans from friends and family.
For her part, Ms. Peters has had seven surgeries since 2020. Through it all, she had health insurance through her employers. Ms. Peters said she knew she had to keep working or would lose coverage and face even bigger bills. Like most plans, however, hers have required she pay thousands of dollars out of pocket.
Within weeks of her diagnosis, the bills rolled in. Then collectors started calling. One call came as Ms. Peters was lying in the recovery room after her double mastectomy. “I was kind of delirious, and I thought it was my kids,” she said. “It was someone asking me to pay a medical bill.”
Ms. Peters faced more bills when she switched jobs later that year and her insurance changed. The deductible and cap on her out-of-pocket costs reset.
In 2021, the deductible and out-of-pocket limit reset again, as they do every year for most health plans. So when Ms. Peters slipped on the ice and broke her wrist – a fracture likely made worse by chemotherapy that weakened her bones – she was charged thousands more.
This year has brought more surgeries and yet more bills, as her deductible and out-of-pocket limit reset again.
“I don’t even know anymore how much I owe,” Ms. Peters said. “Sometimes it feels like people just send me random bills. I don’t even know what they’re for.”
Making sacrifices
Before getting sick, Ms. Peters was earning about $60,000 a year. It was enough to provide for her children, she said, supplemented with a stipend she receives for foster care.
The family budget was always tight. Ms. Peters and her kids don’t take extravagant vacations. Ms. Peters doesn’t own her home and has next to no savings. Now, she said, they are living at the edge. “I keep praying there is a shoe fairy,” she said, joking about the demands of so many growing feet in her home.
Ms. Peters took on extra work to pay some of the bills. Five days a week, she works back-to-back shifts at both a mental health crisis center and a clinic where she counsels teenagers, some of whom are suicidal. In 2021, three friends on the East Coast paid off some of the debt.
But Ms. Peters’ credit score has tumbled below 600. And the bills pile high on the microwave in her kitchen. “I’m middle class,” she said. “Could I make payments on some of these? Yes, I suppose I could.”
That would require trade-offs. She could drop car insurance for her teenage daughter, who just got her license. Canceling ice skating for another daughter would yield an extra $60 a month. But Ms. Peters is reluctant. “Do you know what it feels like to be a foster kid and get a gold medal in ice skating? Do you know what kind of citizen they could become if they know they’re special?” she said. “There seems to be a myth that you can pay for it all. You can’t.”
Many cancer patients face difficult choices.
About 4 in 10 with debt have taken money out of a retirement, college, or other long-term savings account, the KFF poll found; about 3 in 10 have moved in with family or friends or made another change in their living situation.
Kashyap Patel, MD, chief executive of Carolina Blood and Cancer Care Associates, said the South Carolina practice has found patients turning to food banks and other charities to get by. One patient was living in his car. Dr. Patel estimated that half the patients need some kind of financial aid. Even then, many end up in debt.
The Leukemia & Lymphoma Society, which typically helps blood cancer patients navigate health insurance and find food, housing, and other nonmedical assistance, is hearing from more patients simply seeking cash to pay off debt, said Nikki Yuill, who oversees the group’s call center. “People tell us they won’t get follow-up care because they can’t take on more debt,” Ms. Yuill said, recalling one man who refused to call an ambulance even though he couldn’t get to the hospital. “It breaks your heart.”
Academic research has revealed widespread self-rationing by patients. For example, while nearly one in five people taking oral chemotherapy abandon treatment, about half stop when out-of-pocket costs exceed $2,000, according to a 2017 analysis.
Robin Yabroff, PhD, MBA, an epidemiologist at the American Cancer Society, said more research must be done to understand the lasting effects of medical debt on cancer survivors and their families. “What does it mean for a family if they have to liquidate savings or drain college funds or sell their home?” Dr. Yabroff said. “We just don’t know yet.”
As Ms. Peters put away bags of groceries in her kitchen, she conceded she doesn’t know what will happen to her family. Like many patients, she worries about how she’ll pay for tests and follow-up care if the cancer reappears.
She is still wading through collection notices in the mail and fielding calls from debt collectors. Ms. Peters told one that she was prepared to go to court and ask the judge to decide which of her children should be cut off from after-school activities to pay off the debts.
She asked another debt collector whether he had kids. “He told me that it had been my choice to get the surgery,” Ms. Peters recalled. “And I said: ‘Yeah, I guess I chose not to be dead.’ ”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
RAPID CITY, S.D. – Jeni Rae Peters would make promises to herself as she lay awake nights after being diagnosed with breast cancer two years ago.
“My kids had lost so much,” said Ms. Peters, a single mom and mental health counselor. She had just adopted two girls and was fostering four other children. “I swore I wouldn’t force them to have yet another parent.”
Multiple surgeries, radiation, and chemotherapy controlled the cancer. But, despite having insurance, Ms. Peters was left with more than $30,000 of debt, threats from bill collectors, and more anxious nights thinking of her kids. “Do I pull them out of day care? Do I stop their schooling and tutoring? Do I not help them with college?” Ms. Peters asked herself. “My doctor saved my life, but my medical bills are stealing from my children’s lives.”
Cancer kills about 600,000 people in the United States every year, making it a leading cause of death. Many more survive it, because of breakthroughs in medicines and therapies.
That’s forced patients and their families to make gut-wrenching sacrifices even as they confront a grave illness, according to a KHN-NPR investigation of America’s sprawling medical debt problem. The project shows few suffer more than those with cancer.
About two-thirds of adults with health care debt who’ve had cancer themselves or in their family have cut spending on food, clothing, or other household basics, a poll conducted by KFF for this project found. About one in four have declared bankruptcy or lost their home to eviction or foreclosure.
Other research shows that patients from minority groups are more likely to experience financial hardships caused by cancer than White patients, reinforcing racial disparities that shadow the U.S. health care system.
“It’s crippling,” said Dr. Veena Shankaran, MD, an oncologist at the University of Washington, Seattle, who began studying the financial impact of cancer after seeing patients ruined by medical bills. “Even if someone survives the cancer, they often can’t shake the debt.”
Dr. Shankaran found that cancer patients were 71% more likely than Americans without the disease to have bills in collections, face tax liens and mortgage foreclosure, or experience other financial setbacks. Analyzing bankruptcy records and cancer registries in Washington state, Dr. Shankaran and other researchers also discovered that cancer patients were 2½ times as likely to declare bankruptcy as those without the disease. And those who went bankrupt were likelier to die than cancer patients who did not.
Oncologists have a name for this: “financial toxicity,” a term that echoes the intractable vomiting, life-threatening infections, and other noxious effects of chemotherapy.
“Sometimes,” Dr. Shankaran said, “it’s tough to think about what the system puts patients through.”
Cancer diagnosis upends family
At the three-bedroom home in Rapid City that Ms. Peters shares with her children and a friend, there isn’t time most days to dwell on these worries. There are ice skating lessons and driving tests and countless meals to prepare. Teenagers drift in and out, chattering about homework and tattoos and driving.
The smallest children congregate at a small kitchen table under a wall decorated with seven old telephones. (As Ms. Peters tells it, the red one is a hotline to Santa, a green one to the Grinch, and a space shuttle–shaped phone connects to astronauts orbiting the Earth.)
Ms. Peters, 44, presides cheerfully over the chaos, directing her children with snide asides and expressions of love. She watches proudly as one teenage daughter helps another with math in the living room. Later she dances with a 5-year-old to Queen under a disco ball in the entry hall.
Ms. Peters, who sports tattoos and earlier this year dyed her hair purple, never planned to have a family. In her late 30s, she wanted to do more for her adopted community, so she took in foster children, many of whom come from the nearby Pine Ridge Indian Reservation. One of her daughters had been homeless.
“Foster kids are amazing humans,” she said. “I joke I’m the most reluctant parent of the most amazing children that have ever existed. And I get to help raise these little people to be healthy and safe.”
In spring 2020, the secure world Ms. Peters had carefully tended was shattered. As the COVID pandemic spread across the country, she was diagnosed with stage 2 breast cancer.
Within weeks, she had an intravenous port inserted into her chest. Surgeons removed both her breasts, then her ovaries after tests showed she was at risk of ovarian cancer as well.
Cancer treatment today often entails a costly, debilitating march of procedures, infusions, and radiation sessions that can exhaust patients physically and emotionally. It was scary, Ms. Peters said. But she rallied her children. “We talked a lot about how they had all lost siblings or parents or other relatives,” she said. “All I had to do was lose my boobs.”
Much harder, she said, were the endless and perplexing medical bills.
There were bills from the anesthesiologists who attended her surgeries, from the hospital, and from a surgery center. For a while, the hospital stopped sending bills. Then in April, Ms. Peters got a call one morning from a bill collector saying she owed $13,000. In total, Ms. Peters estimates her medical debts now exceed $30,000.
High costs, despite insurance
Debts of that size aren’t unusual. Nationwide, about one in five indebted adults who have had cancer or have a family member who’s been sick say they owe $10,000 or more, according to the KFF poll. Those dealing with cancer are also more likely than others with health care debt to owe large sums and to say they don’t expect to ever pay them off.
This debt has been fueled in part by the advent of lifesaving therapies that also come with eye-popping price tags. The National Cancer Institute calculated the average cost of medical care and drugs tops $42,000 in the year following a cancer diagnosis. Some treatments can exceed $1 million.
Usually, most costs are covered. But patients are increasingly on the hook for large bills because of deductibles and other health plan cost sharing. The average leukemia patient with private health insurance, for example, can expect to pay more than $5,100 in the year after diagnosis, according to an analysis by the consulting firm Milliman. Even Medicare can leave seniors with huge bills. The average blood cancer patient covered by fee-for-service Medicare can expect to pay more than $17,000 out-of-pocket in the year following diagnosis, Milliman found.
Additionally, ongoing surgeries, tests, and medications can make patients pay large out-of-pocket costs year after year. Physicians and patient advocates say this cost sharing -- originally billed as a way to encourage patients to shop for care -- is devastating. “The problem is that model doesn’t work very well with cancer,” said David Eagle, MD, an oncologist at New York Cancer & Blood Specialists.
More broadly, the KHN-NPR investigation found that about 100 million people in the United States are now in debt from medical or dental bills. Poor health is among the most powerful predictors of debt, with this debt concentrated in parts of the country with the highest levels of illness.
According to the KFF poll, 6 in 10 adults with a chronic disease such as cancer, diabetes, or heart disease or with a close family member who is sick have had some kind of health care debt in the past 5 years. The poll was designed to capture not just bills patients haven’t paid, but also other borrowing used to pay for health care, such as credit cards, payment plans, and loans from friends and family.
For her part, Ms. Peters has had seven surgeries since 2020. Through it all, she had health insurance through her employers. Ms. Peters said she knew she had to keep working or would lose coverage and face even bigger bills. Like most plans, however, hers have required she pay thousands of dollars out of pocket.
Within weeks of her diagnosis, the bills rolled in. Then collectors started calling. One call came as Ms. Peters was lying in the recovery room after her double mastectomy. “I was kind of delirious, and I thought it was my kids,” she said. “It was someone asking me to pay a medical bill.”
Ms. Peters faced more bills when she switched jobs later that year and her insurance changed. The deductible and cap on her out-of-pocket costs reset.
In 2021, the deductible and out-of-pocket limit reset again, as they do every year for most health plans. So when Ms. Peters slipped on the ice and broke her wrist – a fracture likely made worse by chemotherapy that weakened her bones – she was charged thousands more.
This year has brought more surgeries and yet more bills, as her deductible and out-of-pocket limit reset again.
“I don’t even know anymore how much I owe,” Ms. Peters said. “Sometimes it feels like people just send me random bills. I don’t even know what they’re for.”
Making sacrifices
Before getting sick, Ms. Peters was earning about $60,000 a year. It was enough to provide for her children, she said, supplemented with a stipend she receives for foster care.
The family budget was always tight. Ms. Peters and her kids don’t take extravagant vacations. Ms. Peters doesn’t own her home and has next to no savings. Now, she said, they are living at the edge. “I keep praying there is a shoe fairy,” she said, joking about the demands of so many growing feet in her home.
Ms. Peters took on extra work to pay some of the bills. Five days a week, she works back-to-back shifts at both a mental health crisis center and a clinic where she counsels teenagers, some of whom are suicidal. In 2021, three friends on the East Coast paid off some of the debt.
But Ms. Peters’ credit score has tumbled below 600. And the bills pile high on the microwave in her kitchen. “I’m middle class,” she said. “Could I make payments on some of these? Yes, I suppose I could.”
That would require trade-offs. She could drop car insurance for her teenage daughter, who just got her license. Canceling ice skating for another daughter would yield an extra $60 a month. But Ms. Peters is reluctant. “Do you know what it feels like to be a foster kid and get a gold medal in ice skating? Do you know what kind of citizen they could become if they know they’re special?” she said. “There seems to be a myth that you can pay for it all. You can’t.”
Many cancer patients face difficult choices.
About 4 in 10 with debt have taken money out of a retirement, college, or other long-term savings account, the KFF poll found; about 3 in 10 have moved in with family or friends or made another change in their living situation.
Kashyap Patel, MD, chief executive of Carolina Blood and Cancer Care Associates, said the South Carolina practice has found patients turning to food banks and other charities to get by. One patient was living in his car. Dr. Patel estimated that half the patients need some kind of financial aid. Even then, many end up in debt.
The Leukemia & Lymphoma Society, which typically helps blood cancer patients navigate health insurance and find food, housing, and other nonmedical assistance, is hearing from more patients simply seeking cash to pay off debt, said Nikki Yuill, who oversees the group’s call center. “People tell us they won’t get follow-up care because they can’t take on more debt,” Ms. Yuill said, recalling one man who refused to call an ambulance even though he couldn’t get to the hospital. “It breaks your heart.”
Academic research has revealed widespread self-rationing by patients. For example, while nearly one in five people taking oral chemotherapy abandon treatment, about half stop when out-of-pocket costs exceed $2,000, according to a 2017 analysis.
Robin Yabroff, PhD, MBA, an epidemiologist at the American Cancer Society, said more research must be done to understand the lasting effects of medical debt on cancer survivors and their families. “What does it mean for a family if they have to liquidate savings or drain college funds or sell their home?” Dr. Yabroff said. “We just don’t know yet.”
As Ms. Peters put away bags of groceries in her kitchen, she conceded she doesn’t know what will happen to her family. Like many patients, she worries about how she’ll pay for tests and follow-up care if the cancer reappears.
She is still wading through collection notices in the mail and fielding calls from debt collectors. Ms. Peters told one that she was prepared to go to court and ask the judge to decide which of her children should be cut off from after-school activities to pay off the debts.
She asked another debt collector whether he had kids. “He told me that it had been my choice to get the surgery,” Ms. Peters recalled. “And I said: ‘Yeah, I guess I chose not to be dead.’ ”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
‘Flat denial’ can leave breast cancer patients with lasting scars
Six years ago, Kim Bowles had a double mastectomy after being diagnosed with stage 3 breast cancer. Instead of opting for reconstruction, she decided to go “flat.” At 35, she had already breast fed both of her children, and didn’t want breasts anymore.
She asked her surgeon for an aesthetic flat closure, showing him photos of a smooth chest with no excess skin flaps. Although he agreed to her request in the office, he reneged in the operating room.
As the anesthesia took effect he said,
When Ms. Bowles woke up, she saw excess tissue instead of the smooth chest she had requested. When she was eventually well enough, she staged a topless sit-in at the hospital and marched outside with a placard, baring her breastless, disfigured chest.
“Do I need a B-cup side-boob?” she asked, pulling at her lateral excess tissue, often referred to as dog ears. “You would never think that a surgeon would leave somebody looking like that,” she said in an interview.
Based on her experience, Ms. Bowles coined the term “flat denial” to describe what her surgeon did.
The weight of flat denial
In a recent study, Deanna Attai, MD, a breast surgeon at University of California, Los Angeles, discovered that more than one in five women who want a flat closure experience flat denial.
But well before that survey, Dr. Attai first came across flat denial more than a decade ago when a patient came to her for a second opinion after another surgeon insisted the patient see a psychiatrist when she requested a flat closure. Dr. Attai performed the flat closure for her instead.
But Dr. Attai said flat denial can take many forms. Some experiences may closely match the paternalistic encounter Ms. Bowles had, where a surgeon disregards a patient’s request. Other surgeons may simply be ignorant that a flat closure can be achieved aesthetically or that patients would even want this option.
This resistance aligns with Hester Schnipper’s experience as an oncology social worker. In her 45-year career, she has often found herself pushing back against breast surgeons who present reconstruction as if it were the only option for patients after mastectomy.
“And because most women are so overwhelmed, so scared, so stressed, they tend to go with whatever the doctor suggests,” said Ms. Schnipper.
Whatever form flat denial takes, the outcome can be damaging to the patient.
“This isn’t just ‘my scar’s a little thick.’ This is much more,” Dr. Attai said. “How do you even put a prosthesis on that? And if you’re not going to do a prosthesis in a bra, how do you even wear a shirt with all of that? It becomes a cleaning issue and depending on how things scar down you can get irregular fibrosis.”
What’s more, the harms of flat denial can extend beyond the physical scars.
Like Ms. Bowles, Anne Marie Champagne had made her desire for a flat closure clear to her surgeon before undergoing a mastectomy in 2009. The surgeon also reneged in the operating room while Champagne was unconscious and unable to object.
Ms. Champagne told The Washington Post that her surgeon’s justification for his actions left her feeling “profound grief, a combination of heartache and anger.
“I couldn’t believe that my surgeon would make a decision for me while I was under anesthesia that went against everything we had discussed – what I had consented to.”
Although it’s not clear how often women experience flat denial, discussions surrounding the issue have increased in recent years.
Ms. Bowles started a patient advocacy organization called “Not Putting on A Shirt” to help other women. And Dr. Attai moderates a Twitter group, called #BCSM or Breast Cancer Social Media, where patients share their experiences of breast cancer treatment, including in some cases flat denial.
“In getting to know so many women in the online space, an early observation was that the conversations online were different than what we had in the office,” Dr. Attai said. Online, “women were less guarded and more open about sharing the entirety of their breast cancer experience, including the more painful and raw moments.”
Being immersed in these moments, it also became clear to Dr. Attai that members of the treatment team don’t always recognize what is most important to a patient. “We might not ask, we might not allow them the time to express their preferences, or we might not really hear them,” she said.
An evolving awareness
National figures on the prevalence of flat closures remain elusive, but it has always been an option. And data indicate that many women choose no reconstruction after mastectomy.
One U.S. survey of women undergoing mastectomy between 2005 and 2007 found that 58% opted not to receive reconstruction, and a more recent British National Mastectomy and Breast Reconstruction Audit from 2011 found 70% chose no reconstruction.
“I definitely have seen more patients requesting to go flat after mastectomy, likely as they feel more empowered to make this decision,” Roshni Rao, MD, chief of breast surgery at Columbia University Medical Center, New York, told The Washington Post.
But to better understand the scope of flat denial, Dr. Attai and colleagues conducted a survey, published in Annals of Surgical Oncology. In it, she found that, among 931 women who had opted to go flat after mastectomy, 22% had experienced flat denial. That meant not being offered the option of going flat, not being supported in their choice to go flat, or not receiving the flat closure surgery initially agreed upon.
In the spring of 2022, Dr. Attai, past president of the American Society of Breast Surgeons, took her results to the society’s annual meeting. The goal was to bring to light aesthetic flat closure techniques as well as the harms of flat denial, presenting photos of the sagging, shriveled skin flaps alongside her analysis.
“No one ever goes into an operation intending it to look like those horrible pictures,” she said.
Asking for “no breast mound reconstruction” should imply a nice neat flat closure, or an aesthetic flat closure, Dr. Attai explained. “A patient should not have to specify she wants the surgeon to make all efforts to remove redundant and excess skin and fat, but I do think having the discussion and making preferences very clear is important, especially as we’ve seen that some patients are not getting the desired outcome.”
To help improve education and communication, the board of “No Putting on a Shirt” also had an exhibitor’s booth focused on aesthetic flat closures at the ASBrS meeting.
And given this growing awareness, the National Accreditation Program for Breast Centers has begun asking breast centers to report their process for shared decision-making on postmastectomy choices and provide proof that patients’ closure choices are being heard and followed.
A shift toward aesthetics
Despite a growing interest in flat closure aesthetics, the landscape shift is still relatively new.
The traditional mastectomy training Dr. Attai and colleagues went through in the 1990s did not emphasize aesthetics.
“I just removed the breast and then I left the room,” she said, explaining that the plastic surgeon took charge of the reconstruction. “We never really learned how to make a nice, neat closure.”
Abhishek Chatterjee, MD, MBA, a breast surgical oncologist and board-certified plastic surgeon, agreed that aesthetics have become more central in the field.
“A decade ago, I would argue that ... it wasn’t in the training program,” but today breast surgery fellowships now include “flat closures that are aesthetically appropriate,” said Dr. Chatterjee, who works at Tufts Medical Center in Boston and is vice chair of the ASBrS oncoplastics committee.
“In my mind, and in any surgeon’s mind, when you do something, you have to do it well ... and with that, aesthetics should be presumed,” he added.
But the term “aesthetic flat closure” was only adopted by the National Cancer Institute in 2020. The NCI, which considers an aesthetic flat closure reconstructive not cosmetic surgery, defines it as rebuilding the shape of the chest wall after breasts are removed, and involves contouring and eliminating excess tissue to create a smooth, flat chest wall.
Achieving this smooth look requires a skilled surgeon trained in flat closure reconstruction, which is not necessarily a guarantee. To help women find a surgeon, “Not Putting on A Shirt” has a flat friendly directory where patients can recommend surgeons who provide aesthetic flat closures. As of August 2022, the list has now grown to over 300 surgeons.
Dr. Chatterjee said the ASBrS is actively involved in training surgeons in aesthetic flat closure. Given this shift, he said most general or breast surgeons should have the skill set to design mastectomy flaps that enable a flat closure with no excess skin, but there are some caveats.
For instance, he noted, if a woman has a lot of breast tissue and excess skin in the outer, lateral folds of the axilla, “it is very, very hard to get a flat closure” and in those rare circumstances, a breast surgeon may need assistance from a plastic surgeon.
But Dr. Attai found a significant gap still exists between what should be done and what is being done in practice.
Part of that disconnect may stem from the lack of a standard of care.
In a recent publication, a team of plastic surgeons from New York University noted that, to date, “there is no plastic surgery literature on specific techniques to achieve an aesthetic flat closure after mastectomy.”
And Dr. Attai added, “there is really no way to know at this point what women are getting when they choose no breast mound reconstruction.”
Physicians may also simply not understand what their patients want.
Dr. Attai said she was “blown away” by the reaction to her presentation on flat denial at ASBrS in April. “I had a lot of members come up to me afterwards and say ‘I had no idea that patients would want this. I am guilty of not offering this.’ ”
In addition, Dr. Chatterjee said, patients may now have “much higher” expectations for a smooth, symmetrical look “versus an outcome with excess skin and bumps.”
But Ms. Bowles said the desire for a more aesthetically pleasing look is nothing new.
“Women have always cared about how they look, they are just shamed into accepting a lesser result,” she argued. “If you look at why women go flat, the primary reason is they don’t want more surgery, not ‘I don’t care what I look like.’ ”
Three years after the mastectomy that left flaps of skin hanging from her chest, Ms. Bowles finally had a revision surgery to achieve the flat closure aesthetic she had wanted from the get-go.
“Nobody expects perfection, but I think the important thing is to have a standard of care that’s optimal,” said Ms. Bowles. “A patient like me should not have needed another surgery.”
A version of this article first appeared on Medscape.com.
Six years ago, Kim Bowles had a double mastectomy after being diagnosed with stage 3 breast cancer. Instead of opting for reconstruction, she decided to go “flat.” At 35, she had already breast fed both of her children, and didn’t want breasts anymore.
She asked her surgeon for an aesthetic flat closure, showing him photos of a smooth chest with no excess skin flaps. Although he agreed to her request in the office, he reneged in the operating room.
As the anesthesia took effect he said,
When Ms. Bowles woke up, she saw excess tissue instead of the smooth chest she had requested. When she was eventually well enough, she staged a topless sit-in at the hospital and marched outside with a placard, baring her breastless, disfigured chest.
“Do I need a B-cup side-boob?” she asked, pulling at her lateral excess tissue, often referred to as dog ears. “You would never think that a surgeon would leave somebody looking like that,” she said in an interview.
Based on her experience, Ms. Bowles coined the term “flat denial” to describe what her surgeon did.
The weight of flat denial
In a recent study, Deanna Attai, MD, a breast surgeon at University of California, Los Angeles, discovered that more than one in five women who want a flat closure experience flat denial.
But well before that survey, Dr. Attai first came across flat denial more than a decade ago when a patient came to her for a second opinion after another surgeon insisted the patient see a psychiatrist when she requested a flat closure. Dr. Attai performed the flat closure for her instead.
But Dr. Attai said flat denial can take many forms. Some experiences may closely match the paternalistic encounter Ms. Bowles had, where a surgeon disregards a patient’s request. Other surgeons may simply be ignorant that a flat closure can be achieved aesthetically or that patients would even want this option.
This resistance aligns with Hester Schnipper’s experience as an oncology social worker. In her 45-year career, she has often found herself pushing back against breast surgeons who present reconstruction as if it were the only option for patients after mastectomy.
“And because most women are so overwhelmed, so scared, so stressed, they tend to go with whatever the doctor suggests,” said Ms. Schnipper.
Whatever form flat denial takes, the outcome can be damaging to the patient.
“This isn’t just ‘my scar’s a little thick.’ This is much more,” Dr. Attai said. “How do you even put a prosthesis on that? And if you’re not going to do a prosthesis in a bra, how do you even wear a shirt with all of that? It becomes a cleaning issue and depending on how things scar down you can get irregular fibrosis.”
What’s more, the harms of flat denial can extend beyond the physical scars.
Like Ms. Bowles, Anne Marie Champagne had made her desire for a flat closure clear to her surgeon before undergoing a mastectomy in 2009. The surgeon also reneged in the operating room while Champagne was unconscious and unable to object.
Ms. Champagne told The Washington Post that her surgeon’s justification for his actions left her feeling “profound grief, a combination of heartache and anger.
“I couldn’t believe that my surgeon would make a decision for me while I was under anesthesia that went against everything we had discussed – what I had consented to.”
Although it’s not clear how often women experience flat denial, discussions surrounding the issue have increased in recent years.
Ms. Bowles started a patient advocacy organization called “Not Putting on A Shirt” to help other women. And Dr. Attai moderates a Twitter group, called #BCSM or Breast Cancer Social Media, where patients share their experiences of breast cancer treatment, including in some cases flat denial.
“In getting to know so many women in the online space, an early observation was that the conversations online were different than what we had in the office,” Dr. Attai said. Online, “women were less guarded and more open about sharing the entirety of their breast cancer experience, including the more painful and raw moments.”
Being immersed in these moments, it also became clear to Dr. Attai that members of the treatment team don’t always recognize what is most important to a patient. “We might not ask, we might not allow them the time to express their preferences, or we might not really hear them,” she said.
An evolving awareness
National figures on the prevalence of flat closures remain elusive, but it has always been an option. And data indicate that many women choose no reconstruction after mastectomy.
One U.S. survey of women undergoing mastectomy between 2005 and 2007 found that 58% opted not to receive reconstruction, and a more recent British National Mastectomy and Breast Reconstruction Audit from 2011 found 70% chose no reconstruction.
“I definitely have seen more patients requesting to go flat after mastectomy, likely as they feel more empowered to make this decision,” Roshni Rao, MD, chief of breast surgery at Columbia University Medical Center, New York, told The Washington Post.
But to better understand the scope of flat denial, Dr. Attai and colleagues conducted a survey, published in Annals of Surgical Oncology. In it, she found that, among 931 women who had opted to go flat after mastectomy, 22% had experienced flat denial. That meant not being offered the option of going flat, not being supported in their choice to go flat, or not receiving the flat closure surgery initially agreed upon.
In the spring of 2022, Dr. Attai, past president of the American Society of Breast Surgeons, took her results to the society’s annual meeting. The goal was to bring to light aesthetic flat closure techniques as well as the harms of flat denial, presenting photos of the sagging, shriveled skin flaps alongside her analysis.
“No one ever goes into an operation intending it to look like those horrible pictures,” she said.
Asking for “no breast mound reconstruction” should imply a nice neat flat closure, or an aesthetic flat closure, Dr. Attai explained. “A patient should not have to specify she wants the surgeon to make all efforts to remove redundant and excess skin and fat, but I do think having the discussion and making preferences very clear is important, especially as we’ve seen that some patients are not getting the desired outcome.”
To help improve education and communication, the board of “No Putting on a Shirt” also had an exhibitor’s booth focused on aesthetic flat closures at the ASBrS meeting.
And given this growing awareness, the National Accreditation Program for Breast Centers has begun asking breast centers to report their process for shared decision-making on postmastectomy choices and provide proof that patients’ closure choices are being heard and followed.
A shift toward aesthetics
Despite a growing interest in flat closure aesthetics, the landscape shift is still relatively new.
The traditional mastectomy training Dr. Attai and colleagues went through in the 1990s did not emphasize aesthetics.
“I just removed the breast and then I left the room,” she said, explaining that the plastic surgeon took charge of the reconstruction. “We never really learned how to make a nice, neat closure.”
Abhishek Chatterjee, MD, MBA, a breast surgical oncologist and board-certified plastic surgeon, agreed that aesthetics have become more central in the field.
“A decade ago, I would argue that ... it wasn’t in the training program,” but today breast surgery fellowships now include “flat closures that are aesthetically appropriate,” said Dr. Chatterjee, who works at Tufts Medical Center in Boston and is vice chair of the ASBrS oncoplastics committee.
“In my mind, and in any surgeon’s mind, when you do something, you have to do it well ... and with that, aesthetics should be presumed,” he added.
But the term “aesthetic flat closure” was only adopted by the National Cancer Institute in 2020. The NCI, which considers an aesthetic flat closure reconstructive not cosmetic surgery, defines it as rebuilding the shape of the chest wall after breasts are removed, and involves contouring and eliminating excess tissue to create a smooth, flat chest wall.
Achieving this smooth look requires a skilled surgeon trained in flat closure reconstruction, which is not necessarily a guarantee. To help women find a surgeon, “Not Putting on A Shirt” has a flat friendly directory where patients can recommend surgeons who provide aesthetic flat closures. As of August 2022, the list has now grown to over 300 surgeons.
Dr. Chatterjee said the ASBrS is actively involved in training surgeons in aesthetic flat closure. Given this shift, he said most general or breast surgeons should have the skill set to design mastectomy flaps that enable a flat closure with no excess skin, but there are some caveats.
For instance, he noted, if a woman has a lot of breast tissue and excess skin in the outer, lateral folds of the axilla, “it is very, very hard to get a flat closure” and in those rare circumstances, a breast surgeon may need assistance from a plastic surgeon.
But Dr. Attai found a significant gap still exists between what should be done and what is being done in practice.
Part of that disconnect may stem from the lack of a standard of care.
In a recent publication, a team of plastic surgeons from New York University noted that, to date, “there is no plastic surgery literature on specific techniques to achieve an aesthetic flat closure after mastectomy.”
And Dr. Attai added, “there is really no way to know at this point what women are getting when they choose no breast mound reconstruction.”
Physicians may also simply not understand what their patients want.
Dr. Attai said she was “blown away” by the reaction to her presentation on flat denial at ASBrS in April. “I had a lot of members come up to me afterwards and say ‘I had no idea that patients would want this. I am guilty of not offering this.’ ”
In addition, Dr. Chatterjee said, patients may now have “much higher” expectations for a smooth, symmetrical look “versus an outcome with excess skin and bumps.”
But Ms. Bowles said the desire for a more aesthetically pleasing look is nothing new.
“Women have always cared about how they look, they are just shamed into accepting a lesser result,” she argued. “If you look at why women go flat, the primary reason is they don’t want more surgery, not ‘I don’t care what I look like.’ ”
Three years after the mastectomy that left flaps of skin hanging from her chest, Ms. Bowles finally had a revision surgery to achieve the flat closure aesthetic she had wanted from the get-go.
“Nobody expects perfection, but I think the important thing is to have a standard of care that’s optimal,” said Ms. Bowles. “A patient like me should not have needed another surgery.”
A version of this article first appeared on Medscape.com.
Six years ago, Kim Bowles had a double mastectomy after being diagnosed with stage 3 breast cancer. Instead of opting for reconstruction, she decided to go “flat.” At 35, she had already breast fed both of her children, and didn’t want breasts anymore.
She asked her surgeon for an aesthetic flat closure, showing him photos of a smooth chest with no excess skin flaps. Although he agreed to her request in the office, he reneged in the operating room.
As the anesthesia took effect he said,
When Ms. Bowles woke up, she saw excess tissue instead of the smooth chest she had requested. When she was eventually well enough, she staged a topless sit-in at the hospital and marched outside with a placard, baring her breastless, disfigured chest.
“Do I need a B-cup side-boob?” she asked, pulling at her lateral excess tissue, often referred to as dog ears. “You would never think that a surgeon would leave somebody looking like that,” she said in an interview.
Based on her experience, Ms. Bowles coined the term “flat denial” to describe what her surgeon did.
The weight of flat denial
In a recent study, Deanna Attai, MD, a breast surgeon at University of California, Los Angeles, discovered that more than one in five women who want a flat closure experience flat denial.
But well before that survey, Dr. Attai first came across flat denial more than a decade ago when a patient came to her for a second opinion after another surgeon insisted the patient see a psychiatrist when she requested a flat closure. Dr. Attai performed the flat closure for her instead.
But Dr. Attai said flat denial can take many forms. Some experiences may closely match the paternalistic encounter Ms. Bowles had, where a surgeon disregards a patient’s request. Other surgeons may simply be ignorant that a flat closure can be achieved aesthetically or that patients would even want this option.
This resistance aligns with Hester Schnipper’s experience as an oncology social worker. In her 45-year career, she has often found herself pushing back against breast surgeons who present reconstruction as if it were the only option for patients after mastectomy.
“And because most women are so overwhelmed, so scared, so stressed, they tend to go with whatever the doctor suggests,” said Ms. Schnipper.
Whatever form flat denial takes, the outcome can be damaging to the patient.
“This isn’t just ‘my scar’s a little thick.’ This is much more,” Dr. Attai said. “How do you even put a prosthesis on that? And if you’re not going to do a prosthesis in a bra, how do you even wear a shirt with all of that? It becomes a cleaning issue and depending on how things scar down you can get irregular fibrosis.”
What’s more, the harms of flat denial can extend beyond the physical scars.
Like Ms. Bowles, Anne Marie Champagne had made her desire for a flat closure clear to her surgeon before undergoing a mastectomy in 2009. The surgeon also reneged in the operating room while Champagne was unconscious and unable to object.
Ms. Champagne told The Washington Post that her surgeon’s justification for his actions left her feeling “profound grief, a combination of heartache and anger.
“I couldn’t believe that my surgeon would make a decision for me while I was under anesthesia that went against everything we had discussed – what I had consented to.”
Although it’s not clear how often women experience flat denial, discussions surrounding the issue have increased in recent years.
Ms. Bowles started a patient advocacy organization called “Not Putting on A Shirt” to help other women. And Dr. Attai moderates a Twitter group, called #BCSM or Breast Cancer Social Media, where patients share their experiences of breast cancer treatment, including in some cases flat denial.
“In getting to know so many women in the online space, an early observation was that the conversations online were different than what we had in the office,” Dr. Attai said. Online, “women were less guarded and more open about sharing the entirety of their breast cancer experience, including the more painful and raw moments.”
Being immersed in these moments, it also became clear to Dr. Attai that members of the treatment team don’t always recognize what is most important to a patient. “We might not ask, we might not allow them the time to express their preferences, or we might not really hear them,” she said.
An evolving awareness
National figures on the prevalence of flat closures remain elusive, but it has always been an option. And data indicate that many women choose no reconstruction after mastectomy.
One U.S. survey of women undergoing mastectomy between 2005 and 2007 found that 58% opted not to receive reconstruction, and a more recent British National Mastectomy and Breast Reconstruction Audit from 2011 found 70% chose no reconstruction.
“I definitely have seen more patients requesting to go flat after mastectomy, likely as they feel more empowered to make this decision,” Roshni Rao, MD, chief of breast surgery at Columbia University Medical Center, New York, told The Washington Post.
But to better understand the scope of flat denial, Dr. Attai and colleagues conducted a survey, published in Annals of Surgical Oncology. In it, she found that, among 931 women who had opted to go flat after mastectomy, 22% had experienced flat denial. That meant not being offered the option of going flat, not being supported in their choice to go flat, or not receiving the flat closure surgery initially agreed upon.
In the spring of 2022, Dr. Attai, past president of the American Society of Breast Surgeons, took her results to the society’s annual meeting. The goal was to bring to light aesthetic flat closure techniques as well as the harms of flat denial, presenting photos of the sagging, shriveled skin flaps alongside her analysis.
“No one ever goes into an operation intending it to look like those horrible pictures,” she said.
Asking for “no breast mound reconstruction” should imply a nice neat flat closure, or an aesthetic flat closure, Dr. Attai explained. “A patient should not have to specify she wants the surgeon to make all efforts to remove redundant and excess skin and fat, but I do think having the discussion and making preferences very clear is important, especially as we’ve seen that some patients are not getting the desired outcome.”
To help improve education and communication, the board of “No Putting on a Shirt” also had an exhibitor’s booth focused on aesthetic flat closures at the ASBrS meeting.
And given this growing awareness, the National Accreditation Program for Breast Centers has begun asking breast centers to report their process for shared decision-making on postmastectomy choices and provide proof that patients’ closure choices are being heard and followed.
A shift toward aesthetics
Despite a growing interest in flat closure aesthetics, the landscape shift is still relatively new.
The traditional mastectomy training Dr. Attai and colleagues went through in the 1990s did not emphasize aesthetics.
“I just removed the breast and then I left the room,” she said, explaining that the plastic surgeon took charge of the reconstruction. “We never really learned how to make a nice, neat closure.”
Abhishek Chatterjee, MD, MBA, a breast surgical oncologist and board-certified plastic surgeon, agreed that aesthetics have become more central in the field.
“A decade ago, I would argue that ... it wasn’t in the training program,” but today breast surgery fellowships now include “flat closures that are aesthetically appropriate,” said Dr. Chatterjee, who works at Tufts Medical Center in Boston and is vice chair of the ASBrS oncoplastics committee.
“In my mind, and in any surgeon’s mind, when you do something, you have to do it well ... and with that, aesthetics should be presumed,” he added.
But the term “aesthetic flat closure” was only adopted by the National Cancer Institute in 2020. The NCI, which considers an aesthetic flat closure reconstructive not cosmetic surgery, defines it as rebuilding the shape of the chest wall after breasts are removed, and involves contouring and eliminating excess tissue to create a smooth, flat chest wall.
Achieving this smooth look requires a skilled surgeon trained in flat closure reconstruction, which is not necessarily a guarantee. To help women find a surgeon, “Not Putting on A Shirt” has a flat friendly directory where patients can recommend surgeons who provide aesthetic flat closures. As of August 2022, the list has now grown to over 300 surgeons.
Dr. Chatterjee said the ASBrS is actively involved in training surgeons in aesthetic flat closure. Given this shift, he said most general or breast surgeons should have the skill set to design mastectomy flaps that enable a flat closure with no excess skin, but there are some caveats.
For instance, he noted, if a woman has a lot of breast tissue and excess skin in the outer, lateral folds of the axilla, “it is very, very hard to get a flat closure” and in those rare circumstances, a breast surgeon may need assistance from a plastic surgeon.
But Dr. Attai found a significant gap still exists between what should be done and what is being done in practice.
Part of that disconnect may stem from the lack of a standard of care.
In a recent publication, a team of plastic surgeons from New York University noted that, to date, “there is no plastic surgery literature on specific techniques to achieve an aesthetic flat closure after mastectomy.”
And Dr. Attai added, “there is really no way to know at this point what women are getting when they choose no breast mound reconstruction.”
Physicians may also simply not understand what their patients want.
Dr. Attai said she was “blown away” by the reaction to her presentation on flat denial at ASBrS in April. “I had a lot of members come up to me afterwards and say ‘I had no idea that patients would want this. I am guilty of not offering this.’ ”
In addition, Dr. Chatterjee said, patients may now have “much higher” expectations for a smooth, symmetrical look “versus an outcome with excess skin and bumps.”
But Ms. Bowles said the desire for a more aesthetically pleasing look is nothing new.
“Women have always cared about how they look, they are just shamed into accepting a lesser result,” she argued. “If you look at why women go flat, the primary reason is they don’t want more surgery, not ‘I don’t care what I look like.’ ”
Three years after the mastectomy that left flaps of skin hanging from her chest, Ms. Bowles finally had a revision surgery to achieve the flat closure aesthetic she had wanted from the get-go.
“Nobody expects perfection, but I think the important thing is to have a standard of care that’s optimal,” said Ms. Bowles. “A patient like me should not have needed another surgery.”
A version of this article first appeared on Medscape.com.
How did cancer survivors fare early in the COVID-19 pandemic?
In addition, the prevalence of unhealthy behaviors, including smoking and poor sleep habits, appeared to decline among cancer survivors as well as adults who had no history of cancer during this period.
“Our findings suggest that the pandemic may have motivated people to adopt certain healthier behaviors,” Xuesong Han, PhD, American Cancer Society, Atlanta, said in a statement. In addition, policies implemented in response to the pandemic regarding insurance coverage, unemployment benefits, and financial assistance “may have contributed to the observed positive changes.”
Dr. Han and colleagues noted that “to the best of our knowledge, our study provides the first nationally representative estimates of the effects of the first year of the COVID-19 pandemic on cancer survivors in the United States.”
The study was published online in Cancer.
Given the considerable upheaval caused by the COVID-19 pandemic, Dr. Han and colleagues wanted to explore how cancer survivors, in particular, were affected during the first year.
The analysis included 57,132 cancer survivors and 1,044,585 adults without cancer who were involved in the Behavioral Risk Factor Surveillance System.
The researchers found that the unemployment rate in 2020 increased by 43% among cancer survivors and by 57% among adults without a cancer history compared with the previous 2 years.
However, the rate of uninsured cancer survivors aged 18-64 years remained relatively stable in 2020 at 8%, compared with 8.8% in 2017-2019.
Notably, the prevalence of insufficient sleep decreased among cancer survivors (43% to 39%), as did smoking (22% to 19%). Among adults without a history of cancer, there was a decline in insufficient sleep (37% to 34.3%) and smoking (16% to 15%). The prevalence of binge drinking decreased among adults with and those without a history of cancer as well.
Obesity rates, however, increased during the first year of the pandemic among cancer survivors (36.5% to 40%) as well as among those with no cancer history (30.8% to 32.7%). In addition, more adults without a cancer history reported an increase in mental distress in 2020 compared with before the COVID-19 pandemic.
The authors suggest that some of the positive trends observed could be explained, in part, by increased enrollment in the Affordable Care Act and by the Families First Coronavirus Response Act, which increased the federal government’s share of Medicaid costs and prevented states from terminating Medicaid coverage during the pandemic.
“These provisions likely compensated for the loss in employer-sponsored insurance,” the authors noted.
But, they added, “as policies related to the public health emergency expire, ongoing monitoring of long-term effects of the COVID-19 pandemic on cancer survivorship is warranted.”
Dr. Han has received a grant from AstraZeneca outside of the current study.
A version of this article first appeared on Medscape.com.
In addition, the prevalence of unhealthy behaviors, including smoking and poor sleep habits, appeared to decline among cancer survivors as well as adults who had no history of cancer during this period.
“Our findings suggest that the pandemic may have motivated people to adopt certain healthier behaviors,” Xuesong Han, PhD, American Cancer Society, Atlanta, said in a statement. In addition, policies implemented in response to the pandemic regarding insurance coverage, unemployment benefits, and financial assistance “may have contributed to the observed positive changes.”
Dr. Han and colleagues noted that “to the best of our knowledge, our study provides the first nationally representative estimates of the effects of the first year of the COVID-19 pandemic on cancer survivors in the United States.”
The study was published online in Cancer.
Given the considerable upheaval caused by the COVID-19 pandemic, Dr. Han and colleagues wanted to explore how cancer survivors, in particular, were affected during the first year.
The analysis included 57,132 cancer survivors and 1,044,585 adults without cancer who were involved in the Behavioral Risk Factor Surveillance System.
The researchers found that the unemployment rate in 2020 increased by 43% among cancer survivors and by 57% among adults without a cancer history compared with the previous 2 years.
However, the rate of uninsured cancer survivors aged 18-64 years remained relatively stable in 2020 at 8%, compared with 8.8% in 2017-2019.
Notably, the prevalence of insufficient sleep decreased among cancer survivors (43% to 39%), as did smoking (22% to 19%). Among adults without a history of cancer, there was a decline in insufficient sleep (37% to 34.3%) and smoking (16% to 15%). The prevalence of binge drinking decreased among adults with and those without a history of cancer as well.
Obesity rates, however, increased during the first year of the pandemic among cancer survivors (36.5% to 40%) as well as among those with no cancer history (30.8% to 32.7%). In addition, more adults without a cancer history reported an increase in mental distress in 2020 compared with before the COVID-19 pandemic.
The authors suggest that some of the positive trends observed could be explained, in part, by increased enrollment in the Affordable Care Act and by the Families First Coronavirus Response Act, which increased the federal government’s share of Medicaid costs and prevented states from terminating Medicaid coverage during the pandemic.
“These provisions likely compensated for the loss in employer-sponsored insurance,” the authors noted.
But, they added, “as policies related to the public health emergency expire, ongoing monitoring of long-term effects of the COVID-19 pandemic on cancer survivorship is warranted.”
Dr. Han has received a grant from AstraZeneca outside of the current study.
A version of this article first appeared on Medscape.com.
In addition, the prevalence of unhealthy behaviors, including smoking and poor sleep habits, appeared to decline among cancer survivors as well as adults who had no history of cancer during this period.
“Our findings suggest that the pandemic may have motivated people to adopt certain healthier behaviors,” Xuesong Han, PhD, American Cancer Society, Atlanta, said in a statement. In addition, policies implemented in response to the pandemic regarding insurance coverage, unemployment benefits, and financial assistance “may have contributed to the observed positive changes.”
Dr. Han and colleagues noted that “to the best of our knowledge, our study provides the first nationally representative estimates of the effects of the first year of the COVID-19 pandemic on cancer survivors in the United States.”
The study was published online in Cancer.
Given the considerable upheaval caused by the COVID-19 pandemic, Dr. Han and colleagues wanted to explore how cancer survivors, in particular, were affected during the first year.
The analysis included 57,132 cancer survivors and 1,044,585 adults without cancer who were involved in the Behavioral Risk Factor Surveillance System.
The researchers found that the unemployment rate in 2020 increased by 43% among cancer survivors and by 57% among adults without a cancer history compared with the previous 2 years.
However, the rate of uninsured cancer survivors aged 18-64 years remained relatively stable in 2020 at 8%, compared with 8.8% in 2017-2019.
Notably, the prevalence of insufficient sleep decreased among cancer survivors (43% to 39%), as did smoking (22% to 19%). Among adults without a history of cancer, there was a decline in insufficient sleep (37% to 34.3%) and smoking (16% to 15%). The prevalence of binge drinking decreased among adults with and those without a history of cancer as well.
Obesity rates, however, increased during the first year of the pandemic among cancer survivors (36.5% to 40%) as well as among those with no cancer history (30.8% to 32.7%). In addition, more adults without a cancer history reported an increase in mental distress in 2020 compared with before the COVID-19 pandemic.
The authors suggest that some of the positive trends observed could be explained, in part, by increased enrollment in the Affordable Care Act and by the Families First Coronavirus Response Act, which increased the federal government’s share of Medicaid costs and prevented states from terminating Medicaid coverage during the pandemic.
“These provisions likely compensated for the loss in employer-sponsored insurance,” the authors noted.
But, they added, “as policies related to the public health emergency expire, ongoing monitoring of long-term effects of the COVID-19 pandemic on cancer survivorship is warranted.”
Dr. Han has received a grant from AstraZeneca outside of the current study.
A version of this article first appeared on Medscape.com.
FROM CANCER
Patients with cancer get valuable second opinion for free
Halfway through her first round of chemotherapy, with hair falling out, weight down, and her brain in a fog, Carolyn Hackett sat down for a Zoom meeting with a team of oncologists.
She didn’t even want a second opinion, but a friend had insisted that she get one, and she had agreed for the sake of their friendship.
But that Zoom meeting likely saved her life. The team of five specialists who had been reviewing her case for a week explained that she had been misdiagnosed. The original pathologist was mistaken. She didn’t have Hodgkin lymphoma; her cancer was really non-Hodgkin T-cell lymphoma. And the chemotherapy regimen she was in the middle of would do nothing to stop it.
The panel of doctors who populated Hackett’s computer screen during that December 2020 Zoom call were all volunteers with an organization called thesecondopinion, based in San Francisco.
The group, organized in 1969, currently offers free second opinions to at least three California patients with cancer each week. Patients meet for an average of 30-40 minutes – though there is really no limit – with a panel of doctors who have expertise in their specific case.
More than 70 cancer-related specialists, both current and retired, make up the roster of volunteers. A paid staffer rounds up a patient’s medical records, imaging and pathology slides. And a team of four to five doctors spends a week reviewing each case.
Then they meet directly with the patient and their doctor to answer questions and deliver their consensus.
Ms. Hackett was in disbelief after her meeting with thesecondopinion. Her diagnosis had gone from bad to worse, but the new information had changed her life. Without it, she would have surely continued chemotherapy and died.
On top of the new acccurate diagnosis, Ms. Hackett said it was a relief and reassurance when the team of volunteer doctors honored and included her oncologist. “I’m a nurse,” she said, and so she knows through experience that medicine comes with egos and frequent risk of lawsuits. But the team from thesecondopinion never criticized her doctor – after all, it wasn’t his mistake anyway – nor did they suggest legal action. Instead, they immediately included him as part of the team and sent him a letter detailing the panel concensus, she said, which made her feel safe.
Second opinions are big business
“And rightly so,” says Alan Venook, MD, a professor of medicine at UCSF with experience and expertise in gastrointestinal malignancies who was approached for comment but is not associated with thesecondopinion. Cancer is an increasingly a sub-specialized area, and every patient should get a second opinion, he said in an interview.
What is unique to an appointment with thesecondopinion, however, is the price tag – $0.
By comparison, a virtual second opinion at the Cleveland Clinic comes at a flat rate of $1,850, and at the Dana-Farber Cancer Institute, Boston, the cost is $2,400.
At UCSF, a second opinion from Dr. Venook and his colleagues will cost patients a couple thousand dollars out-of-pocket, he said. “Many patients don’t have the luxury of paying for a second opinion,” he said.
More than looking for misdiagnosis
Research shows that getting a second opinion can significantly change the course of a patient’s disease and treatment. A 2017 study by the Mayo Clinic found that at their institution, around 22% of second opinions changed the diagnosis, and 66% of patients received a refined or redefined diagnosis.
However, a misdiagnosis – such the case presented by Ms. Hackett – is a rare occurrence at thesecondopinion, said Howard Kleckner, MD, a medical oncologist and the organization’s medical director.
“We aren’t in the business to look for mistakes,” he said.
More often, thesecondopinion panels are about clarifying and helping patients understand the disease and options they have.”People with cancer need to make a peace with it and make peace with the treatment,” Dr. Kleckner said.
He estimates that 90% of the patients that come to the group already have the right diagnosis and treatment plan because, he says, there are “very good doctors in the state and in the Bay Area in particular.”
And even in the case of the remaining 10% of patients whose second opinion differs from their first, it’s largely a case of differences in the staging the disease or treatment options, Dr. Kleckner said.
“We aren’t coming up with brilliant suggestions. Often we are agreeing with what’s already been said,” said David Lakes, MD, a retired medical oncologist who has been volunteering with thesecondopinion for more than 30 years. “But we often see people understand for the first time.”
Both Dr. Kleckner and Dr. Lakes say that the organization attracts a certain kind of doctor, who tends to be an excellent communicator and really cares about helping the patients.
Many of these doctors are retired, but they want to keep doing the work, and they understand which pieces of information are most important for patients to know, Dr. Kleckner told this news organization. They are also willing to do this kind of work even when they won’t get paid, Dr. Kleckner said.
Part of that comes with gray hair and storied careers, Dr. Lakes added. “Retired people have experience and judgment and communication skills that a lot of younger doctors don’t have,” he commented. They often have more experience with some of the tough stuff, like exploring the goals of treatment, discontinuing treatment, and end-of-life care, and they also have more time to engage patients on their emotional health, he said.
Dr. Venook said that the services provided free-of-charge by these volunteers is “laudable,” and their thorough review of all the diagnostic information is “to their credit.” But he questions whether every second opinion provided by the organization is an expert one, since the doctors are no longer practicing. Oncology is a particularly fast-moving field, with many new developments and novel drugs launched in recent years.
“Second opinions are incredibly helpful but [have] to be [provided] by a knowledgeable expert who gets all the details and gives it serious thought,” Dr. Venook said.
Dr. Lakes says that he is constantly evaluating whether he is entitled to keep offering second opinions when he isn’t practicing; so far the answer remains a yes. Although he now has to spend more time researching treatment options like biologics, he still feels adept at engaging with patients and helping patients understand where they are in their illness and the potential benefits of fourth- or fifth-line treatments.
Another strength of thesecondopinion model lies in numbers. Most of the time second opinions are given by one doctor, Dr. Kleckner pointed out. In contrast, thesecondopinion provides the patient with access to a whole team of specialists.
“Sometimes people on the panels don’t completely agree,” Dr. Lakes said. So, before meeting with the patient on Zoom, the doctors review the case together for about half an hour and come up with a consensus. This way there’s no mixed messaging and as little anxiety for the patient as possible, he said.
The fact that patients have direct access to the panel of experts who review their cases is unique in itself, Dr. Kleckner said.
Many hospitals have tumor boards, but they are reserved for physicians, he pointed out. Patients get to hear the board’s opinion secondhand through their primary doctor or oncologist.
But at thesecondopinion, the patient gets to engage with the doctors directly. There is time to review up to four questions that the patient has submitted before the meeting and also time for any additional questions that may have arisen during the course of the meeting.
In oncology, and medicine in general, patients are often shuffled from one specialist to another, Dr. Lakes said. But often, there is no one who takes a steps back to see the whole picture.
That’s part of what thesecondopinion offers, he said. “We have the time, the experience, and no skin in the game. We can think about [the cases] in an intellectual way without feeling like we are in the hot seat or in charge.”
Thanks to her second opinion, Ms. Hackett was able to get connected with an oncologist in San Francisco who specializes in the type of cancer she actually had. She went on to receive nine rounds of a monoclonal antibody treatment formulated for her specific cancer. She is now in remission 6 months after finishing that therapy.
Scans in late July showed that she was cancer-free and doing really well. “I’m so grateful to them. I’m so impressed with thesecondopinion, I can’t believe it,” she said. “I’m alive because of them.”
A version of this article first appeared on Medscape.com.
Halfway through her first round of chemotherapy, with hair falling out, weight down, and her brain in a fog, Carolyn Hackett sat down for a Zoom meeting with a team of oncologists.
She didn’t even want a second opinion, but a friend had insisted that she get one, and she had agreed for the sake of their friendship.
But that Zoom meeting likely saved her life. The team of five specialists who had been reviewing her case for a week explained that she had been misdiagnosed. The original pathologist was mistaken. She didn’t have Hodgkin lymphoma; her cancer was really non-Hodgkin T-cell lymphoma. And the chemotherapy regimen she was in the middle of would do nothing to stop it.
The panel of doctors who populated Hackett’s computer screen during that December 2020 Zoom call were all volunteers with an organization called thesecondopinion, based in San Francisco.
The group, organized in 1969, currently offers free second opinions to at least three California patients with cancer each week. Patients meet for an average of 30-40 minutes – though there is really no limit – with a panel of doctors who have expertise in their specific case.
More than 70 cancer-related specialists, both current and retired, make up the roster of volunteers. A paid staffer rounds up a patient’s medical records, imaging and pathology slides. And a team of four to five doctors spends a week reviewing each case.
Then they meet directly with the patient and their doctor to answer questions and deliver their consensus.
Ms. Hackett was in disbelief after her meeting with thesecondopinion. Her diagnosis had gone from bad to worse, but the new information had changed her life. Without it, she would have surely continued chemotherapy and died.
On top of the new acccurate diagnosis, Ms. Hackett said it was a relief and reassurance when the team of volunteer doctors honored and included her oncologist. “I’m a nurse,” she said, and so she knows through experience that medicine comes with egos and frequent risk of lawsuits. But the team from thesecondopinion never criticized her doctor – after all, it wasn’t his mistake anyway – nor did they suggest legal action. Instead, they immediately included him as part of the team and sent him a letter detailing the panel concensus, she said, which made her feel safe.
Second opinions are big business
“And rightly so,” says Alan Venook, MD, a professor of medicine at UCSF with experience and expertise in gastrointestinal malignancies who was approached for comment but is not associated with thesecondopinion. Cancer is an increasingly a sub-specialized area, and every patient should get a second opinion, he said in an interview.
What is unique to an appointment with thesecondopinion, however, is the price tag – $0.
By comparison, a virtual second opinion at the Cleveland Clinic comes at a flat rate of $1,850, and at the Dana-Farber Cancer Institute, Boston, the cost is $2,400.
At UCSF, a second opinion from Dr. Venook and his colleagues will cost patients a couple thousand dollars out-of-pocket, he said. “Many patients don’t have the luxury of paying for a second opinion,” he said.
More than looking for misdiagnosis
Research shows that getting a second opinion can significantly change the course of a patient’s disease and treatment. A 2017 study by the Mayo Clinic found that at their institution, around 22% of second opinions changed the diagnosis, and 66% of patients received a refined or redefined diagnosis.
However, a misdiagnosis – such the case presented by Ms. Hackett – is a rare occurrence at thesecondopinion, said Howard Kleckner, MD, a medical oncologist and the organization’s medical director.
“We aren’t in the business to look for mistakes,” he said.
More often, thesecondopinion panels are about clarifying and helping patients understand the disease and options they have.”People with cancer need to make a peace with it and make peace with the treatment,” Dr. Kleckner said.
He estimates that 90% of the patients that come to the group already have the right diagnosis and treatment plan because, he says, there are “very good doctors in the state and in the Bay Area in particular.”
And even in the case of the remaining 10% of patients whose second opinion differs from their first, it’s largely a case of differences in the staging the disease or treatment options, Dr. Kleckner said.
“We aren’t coming up with brilliant suggestions. Often we are agreeing with what’s already been said,” said David Lakes, MD, a retired medical oncologist who has been volunteering with thesecondopinion for more than 30 years. “But we often see people understand for the first time.”
Both Dr. Kleckner and Dr. Lakes say that the organization attracts a certain kind of doctor, who tends to be an excellent communicator and really cares about helping the patients.
Many of these doctors are retired, but they want to keep doing the work, and they understand which pieces of information are most important for patients to know, Dr. Kleckner told this news organization. They are also willing to do this kind of work even when they won’t get paid, Dr. Kleckner said.
Part of that comes with gray hair and storied careers, Dr. Lakes added. “Retired people have experience and judgment and communication skills that a lot of younger doctors don’t have,” he commented. They often have more experience with some of the tough stuff, like exploring the goals of treatment, discontinuing treatment, and end-of-life care, and they also have more time to engage patients on their emotional health, he said.
Dr. Venook said that the services provided free-of-charge by these volunteers is “laudable,” and their thorough review of all the diagnostic information is “to their credit.” But he questions whether every second opinion provided by the organization is an expert one, since the doctors are no longer practicing. Oncology is a particularly fast-moving field, with many new developments and novel drugs launched in recent years.
“Second opinions are incredibly helpful but [have] to be [provided] by a knowledgeable expert who gets all the details and gives it serious thought,” Dr. Venook said.
Dr. Lakes says that he is constantly evaluating whether he is entitled to keep offering second opinions when he isn’t practicing; so far the answer remains a yes. Although he now has to spend more time researching treatment options like biologics, he still feels adept at engaging with patients and helping patients understand where they are in their illness and the potential benefits of fourth- or fifth-line treatments.
Another strength of thesecondopinion model lies in numbers. Most of the time second opinions are given by one doctor, Dr. Kleckner pointed out. In contrast, thesecondopinion provides the patient with access to a whole team of specialists.
“Sometimes people on the panels don’t completely agree,” Dr. Lakes said. So, before meeting with the patient on Zoom, the doctors review the case together for about half an hour and come up with a consensus. This way there’s no mixed messaging and as little anxiety for the patient as possible, he said.
The fact that patients have direct access to the panel of experts who review their cases is unique in itself, Dr. Kleckner said.
Many hospitals have tumor boards, but they are reserved for physicians, he pointed out. Patients get to hear the board’s opinion secondhand through their primary doctor or oncologist.
But at thesecondopinion, the patient gets to engage with the doctors directly. There is time to review up to four questions that the patient has submitted before the meeting and also time for any additional questions that may have arisen during the course of the meeting.
In oncology, and medicine in general, patients are often shuffled from one specialist to another, Dr. Lakes said. But often, there is no one who takes a steps back to see the whole picture.
That’s part of what thesecondopinion offers, he said. “We have the time, the experience, and no skin in the game. We can think about [the cases] in an intellectual way without feeling like we are in the hot seat or in charge.”
Thanks to her second opinion, Ms. Hackett was able to get connected with an oncologist in San Francisco who specializes in the type of cancer she actually had. She went on to receive nine rounds of a monoclonal antibody treatment formulated for her specific cancer. She is now in remission 6 months after finishing that therapy.
Scans in late July showed that she was cancer-free and doing really well. “I’m so grateful to them. I’m so impressed with thesecondopinion, I can’t believe it,” she said. “I’m alive because of them.”
A version of this article first appeared on Medscape.com.
Halfway through her first round of chemotherapy, with hair falling out, weight down, and her brain in a fog, Carolyn Hackett sat down for a Zoom meeting with a team of oncologists.
She didn’t even want a second opinion, but a friend had insisted that she get one, and she had agreed for the sake of their friendship.
But that Zoom meeting likely saved her life. The team of five specialists who had been reviewing her case for a week explained that she had been misdiagnosed. The original pathologist was mistaken. She didn’t have Hodgkin lymphoma; her cancer was really non-Hodgkin T-cell lymphoma. And the chemotherapy regimen she was in the middle of would do nothing to stop it.
The panel of doctors who populated Hackett’s computer screen during that December 2020 Zoom call were all volunteers with an organization called thesecondopinion, based in San Francisco.
The group, organized in 1969, currently offers free second opinions to at least three California patients with cancer each week. Patients meet for an average of 30-40 minutes – though there is really no limit – with a panel of doctors who have expertise in their specific case.
More than 70 cancer-related specialists, both current and retired, make up the roster of volunteers. A paid staffer rounds up a patient’s medical records, imaging and pathology slides. And a team of four to five doctors spends a week reviewing each case.
Then they meet directly with the patient and their doctor to answer questions and deliver their consensus.
Ms. Hackett was in disbelief after her meeting with thesecondopinion. Her diagnosis had gone from bad to worse, but the new information had changed her life. Without it, she would have surely continued chemotherapy and died.
On top of the new acccurate diagnosis, Ms. Hackett said it was a relief and reassurance when the team of volunteer doctors honored and included her oncologist. “I’m a nurse,” she said, and so she knows through experience that medicine comes with egos and frequent risk of lawsuits. But the team from thesecondopinion never criticized her doctor – after all, it wasn’t his mistake anyway – nor did they suggest legal action. Instead, they immediately included him as part of the team and sent him a letter detailing the panel concensus, she said, which made her feel safe.
Second opinions are big business
“And rightly so,” says Alan Venook, MD, a professor of medicine at UCSF with experience and expertise in gastrointestinal malignancies who was approached for comment but is not associated with thesecondopinion. Cancer is an increasingly a sub-specialized area, and every patient should get a second opinion, he said in an interview.
What is unique to an appointment with thesecondopinion, however, is the price tag – $0.
By comparison, a virtual second opinion at the Cleveland Clinic comes at a flat rate of $1,850, and at the Dana-Farber Cancer Institute, Boston, the cost is $2,400.
At UCSF, a second opinion from Dr. Venook and his colleagues will cost patients a couple thousand dollars out-of-pocket, he said. “Many patients don’t have the luxury of paying for a second opinion,” he said.
More than looking for misdiagnosis
Research shows that getting a second opinion can significantly change the course of a patient’s disease and treatment. A 2017 study by the Mayo Clinic found that at their institution, around 22% of second opinions changed the diagnosis, and 66% of patients received a refined or redefined diagnosis.
However, a misdiagnosis – such the case presented by Ms. Hackett – is a rare occurrence at thesecondopinion, said Howard Kleckner, MD, a medical oncologist and the organization’s medical director.
“We aren’t in the business to look for mistakes,” he said.
More often, thesecondopinion panels are about clarifying and helping patients understand the disease and options they have.”People with cancer need to make a peace with it and make peace with the treatment,” Dr. Kleckner said.
He estimates that 90% of the patients that come to the group already have the right diagnosis and treatment plan because, he says, there are “very good doctors in the state and in the Bay Area in particular.”
And even in the case of the remaining 10% of patients whose second opinion differs from their first, it’s largely a case of differences in the staging the disease or treatment options, Dr. Kleckner said.
“We aren’t coming up with brilliant suggestions. Often we are agreeing with what’s already been said,” said David Lakes, MD, a retired medical oncologist who has been volunteering with thesecondopinion for more than 30 years. “But we often see people understand for the first time.”
Both Dr. Kleckner and Dr. Lakes say that the organization attracts a certain kind of doctor, who tends to be an excellent communicator and really cares about helping the patients.
Many of these doctors are retired, but they want to keep doing the work, and they understand which pieces of information are most important for patients to know, Dr. Kleckner told this news organization. They are also willing to do this kind of work even when they won’t get paid, Dr. Kleckner said.
Part of that comes with gray hair and storied careers, Dr. Lakes added. “Retired people have experience and judgment and communication skills that a lot of younger doctors don’t have,” he commented. They often have more experience with some of the tough stuff, like exploring the goals of treatment, discontinuing treatment, and end-of-life care, and they also have more time to engage patients on their emotional health, he said.
Dr. Venook said that the services provided free-of-charge by these volunteers is “laudable,” and their thorough review of all the diagnostic information is “to their credit.” But he questions whether every second opinion provided by the organization is an expert one, since the doctors are no longer practicing. Oncology is a particularly fast-moving field, with many new developments and novel drugs launched in recent years.
“Second opinions are incredibly helpful but [have] to be [provided] by a knowledgeable expert who gets all the details and gives it serious thought,” Dr. Venook said.
Dr. Lakes says that he is constantly evaluating whether he is entitled to keep offering second opinions when he isn’t practicing; so far the answer remains a yes. Although he now has to spend more time researching treatment options like biologics, he still feels adept at engaging with patients and helping patients understand where they are in their illness and the potential benefits of fourth- or fifth-line treatments.
Another strength of thesecondopinion model lies in numbers. Most of the time second opinions are given by one doctor, Dr. Kleckner pointed out. In contrast, thesecondopinion provides the patient with access to a whole team of specialists.
“Sometimes people on the panels don’t completely agree,” Dr. Lakes said. So, before meeting with the patient on Zoom, the doctors review the case together for about half an hour and come up with a consensus. This way there’s no mixed messaging and as little anxiety for the patient as possible, he said.
The fact that patients have direct access to the panel of experts who review their cases is unique in itself, Dr. Kleckner said.
Many hospitals have tumor boards, but they are reserved for physicians, he pointed out. Patients get to hear the board’s opinion secondhand through their primary doctor or oncologist.
But at thesecondopinion, the patient gets to engage with the doctors directly. There is time to review up to four questions that the patient has submitted before the meeting and also time for any additional questions that may have arisen during the course of the meeting.
In oncology, and medicine in general, patients are often shuffled from one specialist to another, Dr. Lakes said. But often, there is no one who takes a steps back to see the whole picture.
That’s part of what thesecondopinion offers, he said. “We have the time, the experience, and no skin in the game. We can think about [the cases] in an intellectual way without feeling like we are in the hot seat or in charge.”
Thanks to her second opinion, Ms. Hackett was able to get connected with an oncologist in San Francisco who specializes in the type of cancer she actually had. She went on to receive nine rounds of a monoclonal antibody treatment formulated for her specific cancer. She is now in remission 6 months after finishing that therapy.
Scans in late July showed that she was cancer-free and doing really well. “I’m so grateful to them. I’m so impressed with thesecondopinion, I can’t believe it,” she said. “I’m alive because of them.”
A version of this article first appeared on Medscape.com.
Lung adverse effects in patients taking trastuzumab deruxtecan
although the benefit-to-risk relationship with use of the drug is still positive, say researchers who report a review of early clinical trials with the drug.
T-DXd is a monoclonal antibody that targets HER2. It is approved for use in HER2-positive breast, gastric, and lung cancers.
In the new study, investigators analyzed data from early clinical trials that involved patients with advanced cancers who had been heavily pretreated. They found an incidence of just over 15% for interstitial lung disease (ILD)/pneumonitis associated with the drug. Most patients (77.4%) had grade 1 or 2 ILD, but 2.2% of patients had grade 5 ILD.
“Interstitial lung disease is a known risk factor in patients treated with antibody conjugates for cancer,” commented lead author Charles Powell, MD, Icahn School of Medicine at Mount Sinai, New York. This adverse effect can lead to lung fibrosis and can become severe, life threatening, and even fatal, the authors warned.
The authors also discussed management of the event, which involves corticosteroids, and recommended that any patient who develops ILD of grade 3 or higher be hospitalized.
Close monitoring and proactive management may reduce the risk of ILD, they suggested.
Indeed, the incidence of this adverse effect was lower in a later phase 3 trial of the drug (10.5% in the DESTINY-Breast03 trial) and that the adverse events were less severe in this patient population (none of these events were of grade 4 or 5).
“Increased knowledge ... and implementation of ILD/pneumonitis monitoring, diagnosis, and management guidelines” may have resulted in this adverse effect being identified early and treated before it progressed, they commented.
ILD is highlighted in a boxed warning on the product label.
The study was published online in ESMO Open.
In their review, the investigators evaluated nine early-stage monotherapy clinical trials (phases 1 and 2) involving a total of 1,150 patients (breast cancer, 44.3%; gastric cancer, 25.6%; lung cancer, 17.7%; colorectal cancer, 9.3%, other cancers, 3.0%).
These patients had advanced cancer and had been heavily pretreated with a median of four prior lines of therapy. They received one or more doses of at least 5.4 mg/kg of T-DXd.
Nearly half of the cohort were treated for more than 6 months. A total of 276 potential ILD/pneumonitis events were sent for adjudication; of those, 85% were adjudicated as ILD/pneumonitis.
The overall incidence of adjudicated ILD/pneumonitis events was 15.4%; most were low-grade events. Some 87% of patients experienced their first ILD event within 12 months of treatment. The median time to experiencing an ILD/pneumonitis event was 5.4 months.
Some of the patients who developed grade 1 ILD/pneumonitis were treated and the adverse event resolved. These patients were then rechallenged with the drug. Only 3 of the 47 rechallenged patients experienced recurrence of ILD/pneumonitis, the authors noted.
“Rechallenge with T-DXd after complete resolution of grade 1 events is possible and warrants further investigation,” they commented. They cautioned, however, that rechallenge is not recommended for all patients, at least not for those with grade 2 or higher ILD/pneumonitis.
Overall, the authors concluded that the “benefit-risk of T-DXd treatment is positive,” but they warned that some patients may be at increased risk of developing ILD/pneumonitis
Baseline factors that increase the risk of developing an ILD/pneumonitis event include the following: being younger than 65 years, receiving a T-DXd dose of more than6.4 mg/kg, having a baseline oxygen saturation level of less than 95%, having moderate to severe renal impairment, and having lung comorbidities. In addition, patients who had initially been diagnosed with cancer more than 4 years before receiving the drug were at higher risk of developing ILD/pneumonitis.
“Using learnings from the early clinical trials experience, physician education and patient management protocols were revised and disseminated by the study sponsors [and] more recent trial data in earlier lines of therapy has demonstrated lower rates of ILD events, suggesting close monitoring and proactive management of ILD/pneumonitis is warranted for all patients,” Dr. Powell said in a statement.
The T-DXd clinical trials were sponsored by AstraZeneca and Daiichi Sankyo. Dr. Powell has received fees from Daiichi Sankyo, AstraZeneca, and Voluntis.
A version of this article first appeared on Medscape.com.
although the benefit-to-risk relationship with use of the drug is still positive, say researchers who report a review of early clinical trials with the drug.
T-DXd is a monoclonal antibody that targets HER2. It is approved for use in HER2-positive breast, gastric, and lung cancers.
In the new study, investigators analyzed data from early clinical trials that involved patients with advanced cancers who had been heavily pretreated. They found an incidence of just over 15% for interstitial lung disease (ILD)/pneumonitis associated with the drug. Most patients (77.4%) had grade 1 or 2 ILD, but 2.2% of patients had grade 5 ILD.
“Interstitial lung disease is a known risk factor in patients treated with antibody conjugates for cancer,” commented lead author Charles Powell, MD, Icahn School of Medicine at Mount Sinai, New York. This adverse effect can lead to lung fibrosis and can become severe, life threatening, and even fatal, the authors warned.
The authors also discussed management of the event, which involves corticosteroids, and recommended that any patient who develops ILD of grade 3 or higher be hospitalized.
Close monitoring and proactive management may reduce the risk of ILD, they suggested.
Indeed, the incidence of this adverse effect was lower in a later phase 3 trial of the drug (10.5% in the DESTINY-Breast03 trial) and that the adverse events were less severe in this patient population (none of these events were of grade 4 or 5).
“Increased knowledge ... and implementation of ILD/pneumonitis monitoring, diagnosis, and management guidelines” may have resulted in this adverse effect being identified early and treated before it progressed, they commented.
ILD is highlighted in a boxed warning on the product label.
The study was published online in ESMO Open.
In their review, the investigators evaluated nine early-stage monotherapy clinical trials (phases 1 and 2) involving a total of 1,150 patients (breast cancer, 44.3%; gastric cancer, 25.6%; lung cancer, 17.7%; colorectal cancer, 9.3%, other cancers, 3.0%).
These patients had advanced cancer and had been heavily pretreated with a median of four prior lines of therapy. They received one or more doses of at least 5.4 mg/kg of T-DXd.
Nearly half of the cohort were treated for more than 6 months. A total of 276 potential ILD/pneumonitis events were sent for adjudication; of those, 85% were adjudicated as ILD/pneumonitis.
The overall incidence of adjudicated ILD/pneumonitis events was 15.4%; most were low-grade events. Some 87% of patients experienced their first ILD event within 12 months of treatment. The median time to experiencing an ILD/pneumonitis event was 5.4 months.
Some of the patients who developed grade 1 ILD/pneumonitis were treated and the adverse event resolved. These patients were then rechallenged with the drug. Only 3 of the 47 rechallenged patients experienced recurrence of ILD/pneumonitis, the authors noted.
“Rechallenge with T-DXd after complete resolution of grade 1 events is possible and warrants further investigation,” they commented. They cautioned, however, that rechallenge is not recommended for all patients, at least not for those with grade 2 or higher ILD/pneumonitis.
Overall, the authors concluded that the “benefit-risk of T-DXd treatment is positive,” but they warned that some patients may be at increased risk of developing ILD/pneumonitis
Baseline factors that increase the risk of developing an ILD/pneumonitis event include the following: being younger than 65 years, receiving a T-DXd dose of more than6.4 mg/kg, having a baseline oxygen saturation level of less than 95%, having moderate to severe renal impairment, and having lung comorbidities. In addition, patients who had initially been diagnosed with cancer more than 4 years before receiving the drug were at higher risk of developing ILD/pneumonitis.
“Using learnings from the early clinical trials experience, physician education and patient management protocols were revised and disseminated by the study sponsors [and] more recent trial data in earlier lines of therapy has demonstrated lower rates of ILD events, suggesting close monitoring and proactive management of ILD/pneumonitis is warranted for all patients,” Dr. Powell said in a statement.
The T-DXd clinical trials were sponsored by AstraZeneca and Daiichi Sankyo. Dr. Powell has received fees from Daiichi Sankyo, AstraZeneca, and Voluntis.
A version of this article first appeared on Medscape.com.
although the benefit-to-risk relationship with use of the drug is still positive, say researchers who report a review of early clinical trials with the drug.
T-DXd is a monoclonal antibody that targets HER2. It is approved for use in HER2-positive breast, gastric, and lung cancers.
In the new study, investigators analyzed data from early clinical trials that involved patients with advanced cancers who had been heavily pretreated. They found an incidence of just over 15% for interstitial lung disease (ILD)/pneumonitis associated with the drug. Most patients (77.4%) had grade 1 or 2 ILD, but 2.2% of patients had grade 5 ILD.
“Interstitial lung disease is a known risk factor in patients treated with antibody conjugates for cancer,” commented lead author Charles Powell, MD, Icahn School of Medicine at Mount Sinai, New York. This adverse effect can lead to lung fibrosis and can become severe, life threatening, and even fatal, the authors warned.
The authors also discussed management of the event, which involves corticosteroids, and recommended that any patient who develops ILD of grade 3 or higher be hospitalized.
Close monitoring and proactive management may reduce the risk of ILD, they suggested.
Indeed, the incidence of this adverse effect was lower in a later phase 3 trial of the drug (10.5% in the DESTINY-Breast03 trial) and that the adverse events were less severe in this patient population (none of these events were of grade 4 or 5).
“Increased knowledge ... and implementation of ILD/pneumonitis monitoring, diagnosis, and management guidelines” may have resulted in this adverse effect being identified early and treated before it progressed, they commented.
ILD is highlighted in a boxed warning on the product label.
The study was published online in ESMO Open.
In their review, the investigators evaluated nine early-stage monotherapy clinical trials (phases 1 and 2) involving a total of 1,150 patients (breast cancer, 44.3%; gastric cancer, 25.6%; lung cancer, 17.7%; colorectal cancer, 9.3%, other cancers, 3.0%).
These patients had advanced cancer and had been heavily pretreated with a median of four prior lines of therapy. They received one or more doses of at least 5.4 mg/kg of T-DXd.
Nearly half of the cohort were treated for more than 6 months. A total of 276 potential ILD/pneumonitis events were sent for adjudication; of those, 85% were adjudicated as ILD/pneumonitis.
The overall incidence of adjudicated ILD/pneumonitis events was 15.4%; most were low-grade events. Some 87% of patients experienced their first ILD event within 12 months of treatment. The median time to experiencing an ILD/pneumonitis event was 5.4 months.
Some of the patients who developed grade 1 ILD/pneumonitis were treated and the adverse event resolved. These patients were then rechallenged with the drug. Only 3 of the 47 rechallenged patients experienced recurrence of ILD/pneumonitis, the authors noted.
“Rechallenge with T-DXd after complete resolution of grade 1 events is possible and warrants further investigation,” they commented. They cautioned, however, that rechallenge is not recommended for all patients, at least not for those with grade 2 or higher ILD/pneumonitis.
Overall, the authors concluded that the “benefit-risk of T-DXd treatment is positive,” but they warned that some patients may be at increased risk of developing ILD/pneumonitis
Baseline factors that increase the risk of developing an ILD/pneumonitis event include the following: being younger than 65 years, receiving a T-DXd dose of more than6.4 mg/kg, having a baseline oxygen saturation level of less than 95%, having moderate to severe renal impairment, and having lung comorbidities. In addition, patients who had initially been diagnosed with cancer more than 4 years before receiving the drug were at higher risk of developing ILD/pneumonitis.
“Using learnings from the early clinical trials experience, physician education and patient management protocols were revised and disseminated by the study sponsors [and] more recent trial data in earlier lines of therapy has demonstrated lower rates of ILD events, suggesting close monitoring and proactive management of ILD/pneumonitis is warranted for all patients,” Dr. Powell said in a statement.
The T-DXd clinical trials were sponsored by AstraZeneca and Daiichi Sankyo. Dr. Powell has received fees from Daiichi Sankyo, AstraZeneca, and Voluntis.
A version of this article first appeared on Medscape.com.
FROM ESMO OPEN
Genetic counseling for cancer often costs patients nothing
But even among those who do, the cost is $16 or less, a cohort study shows.
“The findings highlight the relatively low financial costs of genetic counseling, a form of care with potentially substantial implications for cancer treatment,” lead author Mya Roberson, PhD, Vanderbilt University, Nashville, Tenn., and colleagues explained.
The study was published online in JAMA Health Forum.
Genetic counseling is an important feature of cancer care that can affect treatment decisions and surveillance. But coverage of genetic counseling services varies across insurance types.
To understand the costs to patients, the investigators used data from IBM Watson Health MarketScan to create a cohort of privately insured patients with breast, prostate, endometrial, ovarian, colorectal, and pancreatic cancer who had at least one genetic counseling session from 2013 to the end of 2019.
Dr. Roberson and colleagues then calculated out-of-pocket costs – including coinsurance, copayments, and deductibles – and total costs paid on claims for genetic counseling encounters. The cohort included 16,791 patients, the majority of whom had breast cancer.
Although the median insurance payment for genetic counseling encounters was $118 ($58-$211), most patients paid nothing out of pocket for these services. Among the 31% of patients with an out-of-pocket expense, the cost was $16 or less.
Compared with breast cancer patients, men with prostate cancer were 28% more likely to have out-of-pocket costs for genetic counseling, which may “reflect a lack of awareness about the medical necessity of genetic counseling,” the authors suggested.
Overall, the study highlights the value of genetic counseling in cancer care.
“Cancer genetic counseling not only promotes informed decision-making about genetic testing and cancer treatment in the era of precision medicine, but it also is a form of low-cost, high-value care,” the authors wrote.
The study was funded by a grant from the National Cancer Institute. Dr. Roberson disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
But even among those who do, the cost is $16 or less, a cohort study shows.
“The findings highlight the relatively low financial costs of genetic counseling, a form of care with potentially substantial implications for cancer treatment,” lead author Mya Roberson, PhD, Vanderbilt University, Nashville, Tenn., and colleagues explained.
The study was published online in JAMA Health Forum.
Genetic counseling is an important feature of cancer care that can affect treatment decisions and surveillance. But coverage of genetic counseling services varies across insurance types.
To understand the costs to patients, the investigators used data from IBM Watson Health MarketScan to create a cohort of privately insured patients with breast, prostate, endometrial, ovarian, colorectal, and pancreatic cancer who had at least one genetic counseling session from 2013 to the end of 2019.
Dr. Roberson and colleagues then calculated out-of-pocket costs – including coinsurance, copayments, and deductibles – and total costs paid on claims for genetic counseling encounters. The cohort included 16,791 patients, the majority of whom had breast cancer.
Although the median insurance payment for genetic counseling encounters was $118 ($58-$211), most patients paid nothing out of pocket for these services. Among the 31% of patients with an out-of-pocket expense, the cost was $16 or less.
Compared with breast cancer patients, men with prostate cancer were 28% more likely to have out-of-pocket costs for genetic counseling, which may “reflect a lack of awareness about the medical necessity of genetic counseling,” the authors suggested.
Overall, the study highlights the value of genetic counseling in cancer care.
“Cancer genetic counseling not only promotes informed decision-making about genetic testing and cancer treatment in the era of precision medicine, but it also is a form of low-cost, high-value care,” the authors wrote.
The study was funded by a grant from the National Cancer Institute. Dr. Roberson disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
But even among those who do, the cost is $16 or less, a cohort study shows.
“The findings highlight the relatively low financial costs of genetic counseling, a form of care with potentially substantial implications for cancer treatment,” lead author Mya Roberson, PhD, Vanderbilt University, Nashville, Tenn., and colleagues explained.
The study was published online in JAMA Health Forum.
Genetic counseling is an important feature of cancer care that can affect treatment decisions and surveillance. But coverage of genetic counseling services varies across insurance types.
To understand the costs to patients, the investigators used data from IBM Watson Health MarketScan to create a cohort of privately insured patients with breast, prostate, endometrial, ovarian, colorectal, and pancreatic cancer who had at least one genetic counseling session from 2013 to the end of 2019.
Dr. Roberson and colleagues then calculated out-of-pocket costs – including coinsurance, copayments, and deductibles – and total costs paid on claims for genetic counseling encounters. The cohort included 16,791 patients, the majority of whom had breast cancer.
Although the median insurance payment for genetic counseling encounters was $118 ($58-$211), most patients paid nothing out of pocket for these services. Among the 31% of patients with an out-of-pocket expense, the cost was $16 or less.
Compared with breast cancer patients, men with prostate cancer were 28% more likely to have out-of-pocket costs for genetic counseling, which may “reflect a lack of awareness about the medical necessity of genetic counseling,” the authors suggested.
Overall, the study highlights the value of genetic counseling in cancer care.
“Cancer genetic counseling not only promotes informed decision-making about genetic testing and cancer treatment in the era of precision medicine, but it also is a form of low-cost, high-value care,” the authors wrote.
The study was funded by a grant from the National Cancer Institute. Dr. Roberson disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
FROM JAMA HEALTH FORUM
CV admissions on the rise in Americans with cancer
Although cardiovascular disease (CVD) is known to often strike the mortal blow in patients with cancer, a national analysis puts in stark relief the burden of CV-related hospitalizations in this vulnerable population.
, whereas admissions fell 10.9% among those without cancer.
Admissions increased steadily across all cancer types, except prostate cancer, with heart failure being the most common reason for admission.
“Hospital admissions is really important because we know that the size of this group is increasing, given that they live longer and many of the treatments that we offer cause cardiovascular disease or increase the risk of having cardiovascular events. So, from a health care planning perspective, I think it’s really important to see what the burden is likely to be in the next few years,” senior author Mamas Mamas, MD, Keele University, England, told this news organization.
For physicians and the wider population, he said, the findings underscore the need to shift the conversation from saying that patients with cancer are at increased CVD risk to asking how to mitigate this risk. “Because I would say that this increase in cardiovascular admissions, that’s a failure from a preventative perspective.”
The study was published in the European Heart Journal: Quality of Care & Clinical Outcomes.
Individual cancer types
The researchers, led by Ofer Kobo, MD, also with Keele University, used the National Inpatient Sample to identify 42.5 million weighted cases of CV admissions for acute myocardial infarction (AMI), pulmonary embolism, ischemic stroke, heart failure, atrial fibrillation (AFib) or atrial flutter, and intracranial hemorrhage from January 2004 to December 2017. Of these, 1.9 million had a record of cancer.
Patients with cancer were older; had a higher prevalence of valvular disease, anemia, and coagulopathy; and had a lower prevalence of hypertension, diabetes mellitus, and obesity than did patients without cancer.
The most common cancer type was hematologic cancers (26.1%), followed by lung (18.7%), gastrointestinal (12.4%), prostate (11.6%), breast (6.7%), and other in 24.4%.
The admission rate increased across all six admission causes – between 7% for AMI and ischemic stroke and 46% for AFib.
Heart failure was the chief reason for admission among all patients. Annual rates per 100,000 U.S. population increased in patients with cancer (from 13.6 to 16.6; P for trend = .02) and declined in those without (from 352.2 to 349.8; P for trend < .001).
“In the past, patients would be started on medications, and perhaps the importance of monitoring [left ventricular] LV function wasn’t as widely known, whereas now we’re much more aggressive in looking at it and much more aggressive at trying to prevent it,” Dr. Mamas said. “But even with this greater identification and attempting to modify regimens, we’re still getting quite substantial increases in heart failure admissions in this population. And what really surprised me is that it wasn’t just in the breast cancer population, but it was nearly across the board.”
He noted that patients are at highest risk from CV events within the first 2 years of cancer diagnosis. “So that’s really the time where you’ve got to be really aggressive in looking and working up their cardiovascular profile.”
Patients with hematologic cancers (9.7-13.5), lung (7.4-8.9), and gastrointestinal cancer (4.6-6.3) had the highest crude admission rates of CV hospitalizations per 100,000 U.S. population.
The CV admission rate went up from 2.5 to 3.7 per 100,000 U.S. population for breast cancer, and in prostate cancer, the rate dropped from 5.8 to 4.8 per 100,000 U.S. population.
Of note, patients with hematologic cancers also had the highest rate of heart failure hospitalization across all cancer types, which, coupled with their increasing admission rates, likely reflects their exposure to a “constellation of cardiotoxic therapies” as well as pathologic processes related to the cancers themselves, the authors suggest.
In-hospital mortality rates were higher among patients with cancer than those without, ranging from 5% for patients with breast cancer to 9.6% for patients with lung cancer versus 4.2% for those without cancer.
Among patients with cancer, the odds ratio for mortality was highest in those admitted with AFib (4.43), followed by pulmonary embolism (2.36), AMI (2.31), ischemic stroke (2.29), and heart failure (2.24).
In line with prior work and general population trends, in-hospital deaths in primary CV admissions trended lower among patients with cancer over the study period.
Mitigating risk
Commenting on the study, Joerg Herrmann, MD, director of the cardio-oncology clinic at Mayo Clinic, Rochester, Minn., said that the data are “extremely important” because they reflect admissions during a new era of cancer therapy. “Targeted therapies all came out about the turn of the millennium, so we’re not really looking at cancer patients treated with only old and ancient strategies.”
This may be one reason for the increased admissions, but because the study lacked information on specific cancer treatments and the date of cancer diagnosis, it’s not possible to tease out whether the uptick is related to cardiotoxicity or because the oncology outcomes have improved so much that this is a growing population, he said.
One clear implication, however, is that whoever is working on the hospital service will see more patients with a cancer diagnosis, Dr. Herrmann observed.
“Though some may have tried to maybe not get involved with this topic as much, it really calls for some broader scope to get familiar with this very entity,” he said. “And that plays out, in particular, in those patients with a diagnosis of active cancer.”
Dr. Herrmann and colleagues previously reported that patients with active leukemia or lymphoma who were hospitalized with acute coronary syndrome were less likely to receive guideline-directed therapies, even at the Mayo Clinic.
Similarly, a 2020 report by Dr. Mamas and colleagues found that patients with a variety of active cancers derived similar benefit from primary percutaneous coronary intervention for ST-segment–elevation MI as those without cancer but received the treatment less commonly.
Although there’s a greater appreciation that patients with cancer benefit equally from aggressive treatment, much more can be done to mitigate CV risk, Dr. Mamas noted. Valuable coronary information captured by MRI and CT done as part of the cancer investigation is often overlooked. For example, “we know that breast calcification and vascular calcification in the breast are very strong predictors of cardiovascular outcomes and yet people aren’t using this information.”
There are numerous shared risk factors in the development of cancer and coronary artery disease, and patients with cancer often have much worse CV risk profiles but aren’t routinely risk stratified from a CV perspective, he said.
Dr. Mamas said that his team is also studying whether CVD risk prediction tools like the Framingham Risk Score, which were derived from noncancer populations, work as well in patients with cancer. “Often, when you look at the performance of these tools in populations that weren’t covered, they’re much worse.”
“A lot of cancer survivors worry about the recurrence of their cancer and will religiously go and have repeated scans, religiously check themselves, and have all these investigations but don’t think about the actual risk that is greater for them, which is cardiovascular risk,” he said.
The authors report no study funding or relevant financial relationships.
A version of this article first appeared on Medscape.com.
Although cardiovascular disease (CVD) is known to often strike the mortal blow in patients with cancer, a national analysis puts in stark relief the burden of CV-related hospitalizations in this vulnerable population.
, whereas admissions fell 10.9% among those without cancer.
Admissions increased steadily across all cancer types, except prostate cancer, with heart failure being the most common reason for admission.
“Hospital admissions is really important because we know that the size of this group is increasing, given that they live longer and many of the treatments that we offer cause cardiovascular disease or increase the risk of having cardiovascular events. So, from a health care planning perspective, I think it’s really important to see what the burden is likely to be in the next few years,” senior author Mamas Mamas, MD, Keele University, England, told this news organization.
For physicians and the wider population, he said, the findings underscore the need to shift the conversation from saying that patients with cancer are at increased CVD risk to asking how to mitigate this risk. “Because I would say that this increase in cardiovascular admissions, that’s a failure from a preventative perspective.”
The study was published in the European Heart Journal: Quality of Care & Clinical Outcomes.
Individual cancer types
The researchers, led by Ofer Kobo, MD, also with Keele University, used the National Inpatient Sample to identify 42.5 million weighted cases of CV admissions for acute myocardial infarction (AMI), pulmonary embolism, ischemic stroke, heart failure, atrial fibrillation (AFib) or atrial flutter, and intracranial hemorrhage from January 2004 to December 2017. Of these, 1.9 million had a record of cancer.
Patients with cancer were older; had a higher prevalence of valvular disease, anemia, and coagulopathy; and had a lower prevalence of hypertension, diabetes mellitus, and obesity than did patients without cancer.
The most common cancer type was hematologic cancers (26.1%), followed by lung (18.7%), gastrointestinal (12.4%), prostate (11.6%), breast (6.7%), and other in 24.4%.
The admission rate increased across all six admission causes – between 7% for AMI and ischemic stroke and 46% for AFib.
Heart failure was the chief reason for admission among all patients. Annual rates per 100,000 U.S. population increased in patients with cancer (from 13.6 to 16.6; P for trend = .02) and declined in those without (from 352.2 to 349.8; P for trend < .001).
“In the past, patients would be started on medications, and perhaps the importance of monitoring [left ventricular] LV function wasn’t as widely known, whereas now we’re much more aggressive in looking at it and much more aggressive at trying to prevent it,” Dr. Mamas said. “But even with this greater identification and attempting to modify regimens, we’re still getting quite substantial increases in heart failure admissions in this population. And what really surprised me is that it wasn’t just in the breast cancer population, but it was nearly across the board.”
He noted that patients are at highest risk from CV events within the first 2 years of cancer diagnosis. “So that’s really the time where you’ve got to be really aggressive in looking and working up their cardiovascular profile.”
Patients with hematologic cancers (9.7-13.5), lung (7.4-8.9), and gastrointestinal cancer (4.6-6.3) had the highest crude admission rates of CV hospitalizations per 100,000 U.S. population.
The CV admission rate went up from 2.5 to 3.7 per 100,000 U.S. population for breast cancer, and in prostate cancer, the rate dropped from 5.8 to 4.8 per 100,000 U.S. population.
Of note, patients with hematologic cancers also had the highest rate of heart failure hospitalization across all cancer types, which, coupled with their increasing admission rates, likely reflects their exposure to a “constellation of cardiotoxic therapies” as well as pathologic processes related to the cancers themselves, the authors suggest.
In-hospital mortality rates were higher among patients with cancer than those without, ranging from 5% for patients with breast cancer to 9.6% for patients with lung cancer versus 4.2% for those without cancer.
Among patients with cancer, the odds ratio for mortality was highest in those admitted with AFib (4.43), followed by pulmonary embolism (2.36), AMI (2.31), ischemic stroke (2.29), and heart failure (2.24).
In line with prior work and general population trends, in-hospital deaths in primary CV admissions trended lower among patients with cancer over the study period.
Mitigating risk
Commenting on the study, Joerg Herrmann, MD, director of the cardio-oncology clinic at Mayo Clinic, Rochester, Minn., said that the data are “extremely important” because they reflect admissions during a new era of cancer therapy. “Targeted therapies all came out about the turn of the millennium, so we’re not really looking at cancer patients treated with only old and ancient strategies.”
This may be one reason for the increased admissions, but because the study lacked information on specific cancer treatments and the date of cancer diagnosis, it’s not possible to tease out whether the uptick is related to cardiotoxicity or because the oncology outcomes have improved so much that this is a growing population, he said.
One clear implication, however, is that whoever is working on the hospital service will see more patients with a cancer diagnosis, Dr. Herrmann observed.
“Though some may have tried to maybe not get involved with this topic as much, it really calls for some broader scope to get familiar with this very entity,” he said. “And that plays out, in particular, in those patients with a diagnosis of active cancer.”
Dr. Herrmann and colleagues previously reported that patients with active leukemia or lymphoma who were hospitalized with acute coronary syndrome were less likely to receive guideline-directed therapies, even at the Mayo Clinic.
Similarly, a 2020 report by Dr. Mamas and colleagues found that patients with a variety of active cancers derived similar benefit from primary percutaneous coronary intervention for ST-segment–elevation MI as those without cancer but received the treatment less commonly.
Although there’s a greater appreciation that patients with cancer benefit equally from aggressive treatment, much more can be done to mitigate CV risk, Dr. Mamas noted. Valuable coronary information captured by MRI and CT done as part of the cancer investigation is often overlooked. For example, “we know that breast calcification and vascular calcification in the breast are very strong predictors of cardiovascular outcomes and yet people aren’t using this information.”
There are numerous shared risk factors in the development of cancer and coronary artery disease, and patients with cancer often have much worse CV risk profiles but aren’t routinely risk stratified from a CV perspective, he said.
Dr. Mamas said that his team is also studying whether CVD risk prediction tools like the Framingham Risk Score, which were derived from noncancer populations, work as well in patients with cancer. “Often, when you look at the performance of these tools in populations that weren’t covered, they’re much worse.”
“A lot of cancer survivors worry about the recurrence of their cancer and will religiously go and have repeated scans, religiously check themselves, and have all these investigations but don’t think about the actual risk that is greater for them, which is cardiovascular risk,” he said.
The authors report no study funding or relevant financial relationships.
A version of this article first appeared on Medscape.com.
Although cardiovascular disease (CVD) is known to often strike the mortal blow in patients with cancer, a national analysis puts in stark relief the burden of CV-related hospitalizations in this vulnerable population.
, whereas admissions fell 10.9% among those without cancer.
Admissions increased steadily across all cancer types, except prostate cancer, with heart failure being the most common reason for admission.
“Hospital admissions is really important because we know that the size of this group is increasing, given that they live longer and many of the treatments that we offer cause cardiovascular disease or increase the risk of having cardiovascular events. So, from a health care planning perspective, I think it’s really important to see what the burden is likely to be in the next few years,” senior author Mamas Mamas, MD, Keele University, England, told this news organization.
For physicians and the wider population, he said, the findings underscore the need to shift the conversation from saying that patients with cancer are at increased CVD risk to asking how to mitigate this risk. “Because I would say that this increase in cardiovascular admissions, that’s a failure from a preventative perspective.”
The study was published in the European Heart Journal: Quality of Care & Clinical Outcomes.
Individual cancer types
The researchers, led by Ofer Kobo, MD, also with Keele University, used the National Inpatient Sample to identify 42.5 million weighted cases of CV admissions for acute myocardial infarction (AMI), pulmonary embolism, ischemic stroke, heart failure, atrial fibrillation (AFib) or atrial flutter, and intracranial hemorrhage from January 2004 to December 2017. Of these, 1.9 million had a record of cancer.
Patients with cancer were older; had a higher prevalence of valvular disease, anemia, and coagulopathy; and had a lower prevalence of hypertension, diabetes mellitus, and obesity than did patients without cancer.
The most common cancer type was hematologic cancers (26.1%), followed by lung (18.7%), gastrointestinal (12.4%), prostate (11.6%), breast (6.7%), and other in 24.4%.
The admission rate increased across all six admission causes – between 7% for AMI and ischemic stroke and 46% for AFib.
Heart failure was the chief reason for admission among all patients. Annual rates per 100,000 U.S. population increased in patients with cancer (from 13.6 to 16.6; P for trend = .02) and declined in those without (from 352.2 to 349.8; P for trend < .001).
“In the past, patients would be started on medications, and perhaps the importance of monitoring [left ventricular] LV function wasn’t as widely known, whereas now we’re much more aggressive in looking at it and much more aggressive at trying to prevent it,” Dr. Mamas said. “But even with this greater identification and attempting to modify regimens, we’re still getting quite substantial increases in heart failure admissions in this population. And what really surprised me is that it wasn’t just in the breast cancer population, but it was nearly across the board.”
He noted that patients are at highest risk from CV events within the first 2 years of cancer diagnosis. “So that’s really the time where you’ve got to be really aggressive in looking and working up their cardiovascular profile.”
Patients with hematologic cancers (9.7-13.5), lung (7.4-8.9), and gastrointestinal cancer (4.6-6.3) had the highest crude admission rates of CV hospitalizations per 100,000 U.S. population.
The CV admission rate went up from 2.5 to 3.7 per 100,000 U.S. population for breast cancer, and in prostate cancer, the rate dropped from 5.8 to 4.8 per 100,000 U.S. population.
Of note, patients with hematologic cancers also had the highest rate of heart failure hospitalization across all cancer types, which, coupled with their increasing admission rates, likely reflects their exposure to a “constellation of cardiotoxic therapies” as well as pathologic processes related to the cancers themselves, the authors suggest.
In-hospital mortality rates were higher among patients with cancer than those without, ranging from 5% for patients with breast cancer to 9.6% for patients with lung cancer versus 4.2% for those without cancer.
Among patients with cancer, the odds ratio for mortality was highest in those admitted with AFib (4.43), followed by pulmonary embolism (2.36), AMI (2.31), ischemic stroke (2.29), and heart failure (2.24).
In line with prior work and general population trends, in-hospital deaths in primary CV admissions trended lower among patients with cancer over the study period.
Mitigating risk
Commenting on the study, Joerg Herrmann, MD, director of the cardio-oncology clinic at Mayo Clinic, Rochester, Minn., said that the data are “extremely important” because they reflect admissions during a new era of cancer therapy. “Targeted therapies all came out about the turn of the millennium, so we’re not really looking at cancer patients treated with only old and ancient strategies.”
This may be one reason for the increased admissions, but because the study lacked information on specific cancer treatments and the date of cancer diagnosis, it’s not possible to tease out whether the uptick is related to cardiotoxicity or because the oncology outcomes have improved so much that this is a growing population, he said.
One clear implication, however, is that whoever is working on the hospital service will see more patients with a cancer diagnosis, Dr. Herrmann observed.
“Though some may have tried to maybe not get involved with this topic as much, it really calls for some broader scope to get familiar with this very entity,” he said. “And that plays out, in particular, in those patients with a diagnosis of active cancer.”
Dr. Herrmann and colleagues previously reported that patients with active leukemia or lymphoma who were hospitalized with acute coronary syndrome were less likely to receive guideline-directed therapies, even at the Mayo Clinic.
Similarly, a 2020 report by Dr. Mamas and colleagues found that patients with a variety of active cancers derived similar benefit from primary percutaneous coronary intervention for ST-segment–elevation MI as those without cancer but received the treatment less commonly.
Although there’s a greater appreciation that patients with cancer benefit equally from aggressive treatment, much more can be done to mitigate CV risk, Dr. Mamas noted. Valuable coronary information captured by MRI and CT done as part of the cancer investigation is often overlooked. For example, “we know that breast calcification and vascular calcification in the breast are very strong predictors of cardiovascular outcomes and yet people aren’t using this information.”
There are numerous shared risk factors in the development of cancer and coronary artery disease, and patients with cancer often have much worse CV risk profiles but aren’t routinely risk stratified from a CV perspective, he said.
Dr. Mamas said that his team is also studying whether CVD risk prediction tools like the Framingham Risk Score, which were derived from noncancer populations, work as well in patients with cancer. “Often, when you look at the performance of these tools in populations that weren’t covered, they’re much worse.”
“A lot of cancer survivors worry about the recurrence of their cancer and will religiously go and have repeated scans, religiously check themselves, and have all these investigations but don’t think about the actual risk that is greater for them, which is cardiovascular risk,” he said.
The authors report no study funding or relevant financial relationships.
A version of this article first appeared on Medscape.com.
FROM European Heart Journal: Quality of Care & Clinical Outcomes
Five things most physicians don’t know about radiation oncology
As a field, radiation oncology is perhaps one of medicine’s best kept secrets. Sometimes, even our own colleagues don’t know where our department exists in the hospital or exactly what we do.
As two radiation oncologists who are, in fact, the children of radiation oncologists, we will admit that it’s possible we are a tiny bit biased. We cannot lie, though: Our field is a hidden gem.
What is well known is that radiation oncologists have a symbiotic relationship with our treatment technology. The evolution of treatment machines and radiation precision allows us to deliver patient-tailored treatment down to the millimeter. What may get lost in the discussions of isodose lines and penumbra, however, is that we’ve also got cutting-edge research and personalized patient care within a specialized team in the depths of the hospital.
Because the inner workings of what happens to patients as they come in and out of our office remains a mystery,
1. Nobody knows what goes on in the basement.
Misconceptions about our subspecialty are common, even among other oncologists. A frequent misconception is that a radiation oncologist’s involvement in patient care is limited, and radiation is delivered in a standardized manner. This essentially renders radiation oncologists technicians of expensive machines.
In reality however, radiation oncologists touch every aspect of a patient’s care, and customized radiation therapy may be indicated for virtually every cancer site in both curative and palliative settings. We strive to deliver precision medicine and practice truly patient-centered care.
To cure cancer, radiation may be used in the neoadjuvant (prior to local surgical resection), definitive (as the primary local therapy), and adjuvant (postsurgical) setting. In palliative cases, radiation can be used to treat areas of metastatic spread as well as primary unresectable tumors to alleviate obstruction and/or bleeding symptoms. Referral to radiation oncology, therefore, can be appropriate at many different points of time on the continuum of cancer care.
For many treating radiation oncologists, the close personal connections that we form with our patients is one of the primary reasons we went into this field. Not only are we making patient-centered clinical decisions during every step of the treatment plan evaluation and optimization but we also see our patients weekly for clinical visits and then ongoing in visits that may span many years of survivorship.
Our deep commitment to addressing patient needs as they are receiving treatment and responsibility for late radiation effects is absolutely an integral part of our training and lifelong practice.
2. We get down in the details.
The workflow from consultation to radiation delivery can be confusing for anyone outside our specialized field.
Once seen in consult and considered a good candidate for radiation, patients will enter the essential next step: the treatment planning imaging – or “simulation.”
The simulation scan – mostly CT, although occasionally fused MRI or PET – involves a separate appointment and another hour or so of arranging and scanning patients in the exact position that they will be treated. Given the precision of modern radiation, the simulation often includes making a customized mold so patients have minimal movement during treatment. These simulation images allow the radiation oncology team to create a treatment plan that is customized to each patient and precisely reproducible during their course of radiation treatments – what’s known as fractions.
Creating a treatment plan involves a radiation oncologist literally drawing – or contouring – on pictures of the patient’s internal anatomy in three dimensions. Radiation oncologists contour exactly where the cancer is – or where it was if the treatment is given postoperatively – and identify the surrounding organs so that the doses can be preferentially directed to the cancer target and minimize risk to nearby organs. This precision is within millimeters and accounts for microscopic disease, organ motion, and patient setup. Ultimately, we create colorful heat gradient volumes of the anticipated radiation dose delivery and optimize these to reflect our planning priorities.
We use advanced technologies to shape the beams of radiation to treat the tumor and avoid delivering high doses to the neighboring tissues with techniques such as intensity modulated radiation therapy (IMRT), stereotactic ablative radiation therapy (SABR or SBRT), and stereotactic radiosurgery. We can also take advantage of the unique properties of different modalities, such as proton therapy and electron therapy, to achieve these same goals if indicated. Radiation oncologists live for precision medicine in every aspect of their workflow.
3. We roll deep.
Radiation oncology is exemplary of “the art of medicine.” We fuse anatomy-based treatment design with advanced technology and orchestrate the daily functions of a large medical team.
But, the treatment plan and delivery would not be possible without the input and care given within a large multi- and intradisciplinary team of oncologists, medical physicists, dosimetrists, radiation therapists, nurses, social workers, and other support staff. Radiation oncologists participate in regular tumor boards with surgeons, medical oncologists, pathologists, and radiologists to optimize interdisciplinary management of complex patients, providing a thoughtful tumor localization and treatment plan, as well as to better understand an individual’s ongoing symptoms and well-being as a whole. Considering all aspects of what a patient may need involves communication with fellow physicians, nurse navigators, and social workers.
Within our own department, treatment plan creation and quality checking or verification can sometimes take over 2 weeks, with detailed input from dosimetrists and medical physicists. The actual treatment delivery involves daily communication with the radiation therapists who are dedicated to each treatment machine – like the linear accelerator – and symptom management with clinic nurses and supportive staff, such as physical therapists and registered dietitians.
This massive team effort is required to get each patient through daily radiation treatments that can last 7 weeks and may require rapid replanning if the tumor shrinks or the patient loses weight.
As part of this team, radiation oncologists are uniquely positioned to quarterback each play and guide the entire game strategy.
4. Radiation therapy takes a lot of heat.
Radiation therapy is often blamed for issues unrelated to the treatment. Irradiating the pelvis for prostate cancer, for instance, does not cause a headache or heartburn during or after treatment.
Other than fatigue, associated side effects are localized and related to the total radiation dose and fraction size – how much and how fast – that reaches the surrounding tissues.
Our colleagues often swap stories of the bizarre things radiation therapy has been blamed for, including dental problems in someone receiving vaginal cylinder treatment, heart dysfunction in someone treated for rectal cancer, and hip fracture in someone treated for breast cancer because the radiation “destroyed” their bones. At best, these are humorous stories, but at worst, they can delay diagnosis and treatment of what is truly causing someone’s symptoms.
5. We truly believe that less is more.
One of the most fundamental aspects of radiation oncology is our drive to optimize treatment delivery and continually improve patient care – sometimes at our own field’s economic detriment. We’re dedicated to showing that patients may get the same benefit from less and less radiation.
In the past 2 decades, the evolution and adoption of photon IMRT and proton therapy has allowed radiation plans to successfully spare surrounding tissue while improving our targeting. This evolution is coupled with technological and imaging advances that allow us to delivery of doses to certain tumors via SABR/SBRT in one to five total fractions.
A prime example: Treatment to eradicate lung or gastrointestinal tumors, which used to span up to 6 weeks, can now potentially be delivered in as little as 1 week.
For other common cancers, hypofractionation – slightly higher radiation doses per fraction at fewer total fractions overall – has revolutionized patient care, providing less radiation without impacting survival or increasing treatment toxicity.
Take breast cancer care: 50 years ago, virtually all patients with breast cancer received a mastectomy and lymph node dissections. Today, surgical techniques for lumpectomy paired with radiation therapy to the whole breast now allows us to preserve disease-free survival for those who elected to keep their breasts.
Over the past 20 years, the standards of care have shifted from 6-7 weeks of treatment to 3-4 weeks using a hypofractionated model that involves daily whole-breast radiation. The most recent clinical trials have shown that whole-breast radiation can be delivered safely and effectively for select women in as few as five fractions with either whole or partial breast targeting. Additional research driven by the idea of “right sizing” radiation treatment has even shown that certain women may not need radiation at all.
This evolution in radiation therapy illustrates how our subspecialty is constantly working to improve survival and patient well-being, form deep connections with our patients, and push the boundaries of medical innovations.
We are proud to be radiation oncologists and happy to share more. Want to know more about what goes on in the basement? Come on down, we’re happy to show you around.
Dr. Giap is a resident in the department of radiation oncology at the University of Florida, Gainesville. Dr. Chino is an assistant attending in the department of radiation oncology at Memorial Sloan Kettering Cancer Center, New York. Neither reported any relevant conflicts of interest.
A version of this article first appeared on Medscape.com.
As a field, radiation oncology is perhaps one of medicine’s best kept secrets. Sometimes, even our own colleagues don’t know where our department exists in the hospital or exactly what we do.
As two radiation oncologists who are, in fact, the children of radiation oncologists, we will admit that it’s possible we are a tiny bit biased. We cannot lie, though: Our field is a hidden gem.
What is well known is that radiation oncologists have a symbiotic relationship with our treatment technology. The evolution of treatment machines and radiation precision allows us to deliver patient-tailored treatment down to the millimeter. What may get lost in the discussions of isodose lines and penumbra, however, is that we’ve also got cutting-edge research and personalized patient care within a specialized team in the depths of the hospital.
Because the inner workings of what happens to patients as they come in and out of our office remains a mystery,
1. Nobody knows what goes on in the basement.
Misconceptions about our subspecialty are common, even among other oncologists. A frequent misconception is that a radiation oncologist’s involvement in patient care is limited, and radiation is delivered in a standardized manner. This essentially renders radiation oncologists technicians of expensive machines.
In reality however, radiation oncologists touch every aspect of a patient’s care, and customized radiation therapy may be indicated for virtually every cancer site in both curative and palliative settings. We strive to deliver precision medicine and practice truly patient-centered care.
To cure cancer, radiation may be used in the neoadjuvant (prior to local surgical resection), definitive (as the primary local therapy), and adjuvant (postsurgical) setting. In palliative cases, radiation can be used to treat areas of metastatic spread as well as primary unresectable tumors to alleviate obstruction and/or bleeding symptoms. Referral to radiation oncology, therefore, can be appropriate at many different points of time on the continuum of cancer care.
For many treating radiation oncologists, the close personal connections that we form with our patients is one of the primary reasons we went into this field. Not only are we making patient-centered clinical decisions during every step of the treatment plan evaluation and optimization but we also see our patients weekly for clinical visits and then ongoing in visits that may span many years of survivorship.
Our deep commitment to addressing patient needs as they are receiving treatment and responsibility for late radiation effects is absolutely an integral part of our training and lifelong practice.
2. We get down in the details.
The workflow from consultation to radiation delivery can be confusing for anyone outside our specialized field.
Once seen in consult and considered a good candidate for radiation, patients will enter the essential next step: the treatment planning imaging – or “simulation.”
The simulation scan – mostly CT, although occasionally fused MRI or PET – involves a separate appointment and another hour or so of arranging and scanning patients in the exact position that they will be treated. Given the precision of modern radiation, the simulation often includes making a customized mold so patients have minimal movement during treatment. These simulation images allow the radiation oncology team to create a treatment plan that is customized to each patient and precisely reproducible during their course of radiation treatments – what’s known as fractions.
Creating a treatment plan involves a radiation oncologist literally drawing – or contouring – on pictures of the patient’s internal anatomy in three dimensions. Radiation oncologists contour exactly where the cancer is – or where it was if the treatment is given postoperatively – and identify the surrounding organs so that the doses can be preferentially directed to the cancer target and minimize risk to nearby organs. This precision is within millimeters and accounts for microscopic disease, organ motion, and patient setup. Ultimately, we create colorful heat gradient volumes of the anticipated radiation dose delivery and optimize these to reflect our planning priorities.
We use advanced technologies to shape the beams of radiation to treat the tumor and avoid delivering high doses to the neighboring tissues with techniques such as intensity modulated radiation therapy (IMRT), stereotactic ablative radiation therapy (SABR or SBRT), and stereotactic radiosurgery. We can also take advantage of the unique properties of different modalities, such as proton therapy and electron therapy, to achieve these same goals if indicated. Radiation oncologists live for precision medicine in every aspect of their workflow.
3. We roll deep.
Radiation oncology is exemplary of “the art of medicine.” We fuse anatomy-based treatment design with advanced technology and orchestrate the daily functions of a large medical team.
But, the treatment plan and delivery would not be possible without the input and care given within a large multi- and intradisciplinary team of oncologists, medical physicists, dosimetrists, radiation therapists, nurses, social workers, and other support staff. Radiation oncologists participate in regular tumor boards with surgeons, medical oncologists, pathologists, and radiologists to optimize interdisciplinary management of complex patients, providing a thoughtful tumor localization and treatment plan, as well as to better understand an individual’s ongoing symptoms and well-being as a whole. Considering all aspects of what a patient may need involves communication with fellow physicians, nurse navigators, and social workers.
Within our own department, treatment plan creation and quality checking or verification can sometimes take over 2 weeks, with detailed input from dosimetrists and medical physicists. The actual treatment delivery involves daily communication with the radiation therapists who are dedicated to each treatment machine – like the linear accelerator – and symptom management with clinic nurses and supportive staff, such as physical therapists and registered dietitians.
This massive team effort is required to get each patient through daily radiation treatments that can last 7 weeks and may require rapid replanning if the tumor shrinks or the patient loses weight.
As part of this team, radiation oncologists are uniquely positioned to quarterback each play and guide the entire game strategy.
4. Radiation therapy takes a lot of heat.
Radiation therapy is often blamed for issues unrelated to the treatment. Irradiating the pelvis for prostate cancer, for instance, does not cause a headache or heartburn during or after treatment.
Other than fatigue, associated side effects are localized and related to the total radiation dose and fraction size – how much and how fast – that reaches the surrounding tissues.
Our colleagues often swap stories of the bizarre things radiation therapy has been blamed for, including dental problems in someone receiving vaginal cylinder treatment, heart dysfunction in someone treated for rectal cancer, and hip fracture in someone treated for breast cancer because the radiation “destroyed” their bones. At best, these are humorous stories, but at worst, they can delay diagnosis and treatment of what is truly causing someone’s symptoms.
5. We truly believe that less is more.
One of the most fundamental aspects of radiation oncology is our drive to optimize treatment delivery and continually improve patient care – sometimes at our own field’s economic detriment. We’re dedicated to showing that patients may get the same benefit from less and less radiation.
In the past 2 decades, the evolution and adoption of photon IMRT and proton therapy has allowed radiation plans to successfully spare surrounding tissue while improving our targeting. This evolution is coupled with technological and imaging advances that allow us to delivery of doses to certain tumors via SABR/SBRT in one to five total fractions.
A prime example: Treatment to eradicate lung or gastrointestinal tumors, which used to span up to 6 weeks, can now potentially be delivered in as little as 1 week.
For other common cancers, hypofractionation – slightly higher radiation doses per fraction at fewer total fractions overall – has revolutionized patient care, providing less radiation without impacting survival or increasing treatment toxicity.
Take breast cancer care: 50 years ago, virtually all patients with breast cancer received a mastectomy and lymph node dissections. Today, surgical techniques for lumpectomy paired with radiation therapy to the whole breast now allows us to preserve disease-free survival for those who elected to keep their breasts.
Over the past 20 years, the standards of care have shifted from 6-7 weeks of treatment to 3-4 weeks using a hypofractionated model that involves daily whole-breast radiation. The most recent clinical trials have shown that whole-breast radiation can be delivered safely and effectively for select women in as few as five fractions with either whole or partial breast targeting. Additional research driven by the idea of “right sizing” radiation treatment has even shown that certain women may not need radiation at all.
This evolution in radiation therapy illustrates how our subspecialty is constantly working to improve survival and patient well-being, form deep connections with our patients, and push the boundaries of medical innovations.
We are proud to be radiation oncologists and happy to share more. Want to know more about what goes on in the basement? Come on down, we’re happy to show you around.
Dr. Giap is a resident in the department of radiation oncology at the University of Florida, Gainesville. Dr. Chino is an assistant attending in the department of radiation oncology at Memorial Sloan Kettering Cancer Center, New York. Neither reported any relevant conflicts of interest.
A version of this article first appeared on Medscape.com.
As a field, radiation oncology is perhaps one of medicine’s best kept secrets. Sometimes, even our own colleagues don’t know where our department exists in the hospital or exactly what we do.
As two radiation oncologists who are, in fact, the children of radiation oncologists, we will admit that it’s possible we are a tiny bit biased. We cannot lie, though: Our field is a hidden gem.
What is well known is that radiation oncologists have a symbiotic relationship with our treatment technology. The evolution of treatment machines and radiation precision allows us to deliver patient-tailored treatment down to the millimeter. What may get lost in the discussions of isodose lines and penumbra, however, is that we’ve also got cutting-edge research and personalized patient care within a specialized team in the depths of the hospital.
Because the inner workings of what happens to patients as they come in and out of our office remains a mystery,
1. Nobody knows what goes on in the basement.
Misconceptions about our subspecialty are common, even among other oncologists. A frequent misconception is that a radiation oncologist’s involvement in patient care is limited, and radiation is delivered in a standardized manner. This essentially renders radiation oncologists technicians of expensive machines.
In reality however, radiation oncologists touch every aspect of a patient’s care, and customized radiation therapy may be indicated for virtually every cancer site in both curative and palliative settings. We strive to deliver precision medicine and practice truly patient-centered care.
To cure cancer, radiation may be used in the neoadjuvant (prior to local surgical resection), definitive (as the primary local therapy), and adjuvant (postsurgical) setting. In palliative cases, radiation can be used to treat areas of metastatic spread as well as primary unresectable tumors to alleviate obstruction and/or bleeding symptoms. Referral to radiation oncology, therefore, can be appropriate at many different points of time on the continuum of cancer care.
For many treating radiation oncologists, the close personal connections that we form with our patients is one of the primary reasons we went into this field. Not only are we making patient-centered clinical decisions during every step of the treatment plan evaluation and optimization but we also see our patients weekly for clinical visits and then ongoing in visits that may span many years of survivorship.
Our deep commitment to addressing patient needs as they are receiving treatment and responsibility for late radiation effects is absolutely an integral part of our training and lifelong practice.
2. We get down in the details.
The workflow from consultation to radiation delivery can be confusing for anyone outside our specialized field.
Once seen in consult and considered a good candidate for radiation, patients will enter the essential next step: the treatment planning imaging – or “simulation.”
The simulation scan – mostly CT, although occasionally fused MRI or PET – involves a separate appointment and another hour or so of arranging and scanning patients in the exact position that they will be treated. Given the precision of modern radiation, the simulation often includes making a customized mold so patients have minimal movement during treatment. These simulation images allow the radiation oncology team to create a treatment plan that is customized to each patient and precisely reproducible during their course of radiation treatments – what’s known as fractions.
Creating a treatment plan involves a radiation oncologist literally drawing – or contouring – on pictures of the patient’s internal anatomy in three dimensions. Radiation oncologists contour exactly where the cancer is – or where it was if the treatment is given postoperatively – and identify the surrounding organs so that the doses can be preferentially directed to the cancer target and minimize risk to nearby organs. This precision is within millimeters and accounts for microscopic disease, organ motion, and patient setup. Ultimately, we create colorful heat gradient volumes of the anticipated radiation dose delivery and optimize these to reflect our planning priorities.
We use advanced technologies to shape the beams of radiation to treat the tumor and avoid delivering high doses to the neighboring tissues with techniques such as intensity modulated radiation therapy (IMRT), stereotactic ablative radiation therapy (SABR or SBRT), and stereotactic radiosurgery. We can also take advantage of the unique properties of different modalities, such as proton therapy and electron therapy, to achieve these same goals if indicated. Radiation oncologists live for precision medicine in every aspect of their workflow.
3. We roll deep.
Radiation oncology is exemplary of “the art of medicine.” We fuse anatomy-based treatment design with advanced technology and orchestrate the daily functions of a large medical team.
But, the treatment plan and delivery would not be possible without the input and care given within a large multi- and intradisciplinary team of oncologists, medical physicists, dosimetrists, radiation therapists, nurses, social workers, and other support staff. Radiation oncologists participate in regular tumor boards with surgeons, medical oncologists, pathologists, and radiologists to optimize interdisciplinary management of complex patients, providing a thoughtful tumor localization and treatment plan, as well as to better understand an individual’s ongoing symptoms and well-being as a whole. Considering all aspects of what a patient may need involves communication with fellow physicians, nurse navigators, and social workers.
Within our own department, treatment plan creation and quality checking or verification can sometimes take over 2 weeks, with detailed input from dosimetrists and medical physicists. The actual treatment delivery involves daily communication with the radiation therapists who are dedicated to each treatment machine – like the linear accelerator – and symptom management with clinic nurses and supportive staff, such as physical therapists and registered dietitians.
This massive team effort is required to get each patient through daily radiation treatments that can last 7 weeks and may require rapid replanning if the tumor shrinks or the patient loses weight.
As part of this team, radiation oncologists are uniquely positioned to quarterback each play and guide the entire game strategy.
4. Radiation therapy takes a lot of heat.
Radiation therapy is often blamed for issues unrelated to the treatment. Irradiating the pelvis for prostate cancer, for instance, does not cause a headache or heartburn during or after treatment.
Other than fatigue, associated side effects are localized and related to the total radiation dose and fraction size – how much and how fast – that reaches the surrounding tissues.
Our colleagues often swap stories of the bizarre things radiation therapy has been blamed for, including dental problems in someone receiving vaginal cylinder treatment, heart dysfunction in someone treated for rectal cancer, and hip fracture in someone treated for breast cancer because the radiation “destroyed” their bones. At best, these are humorous stories, but at worst, they can delay diagnosis and treatment of what is truly causing someone’s symptoms.
5. We truly believe that less is more.
One of the most fundamental aspects of radiation oncology is our drive to optimize treatment delivery and continually improve patient care – sometimes at our own field’s economic detriment. We’re dedicated to showing that patients may get the same benefit from less and less radiation.
In the past 2 decades, the evolution and adoption of photon IMRT and proton therapy has allowed radiation plans to successfully spare surrounding tissue while improving our targeting. This evolution is coupled with technological and imaging advances that allow us to delivery of doses to certain tumors via SABR/SBRT in one to five total fractions.
A prime example: Treatment to eradicate lung or gastrointestinal tumors, which used to span up to 6 weeks, can now potentially be delivered in as little as 1 week.
For other common cancers, hypofractionation – slightly higher radiation doses per fraction at fewer total fractions overall – has revolutionized patient care, providing less radiation without impacting survival or increasing treatment toxicity.
Take breast cancer care: 50 years ago, virtually all patients with breast cancer received a mastectomy and lymph node dissections. Today, surgical techniques for lumpectomy paired with radiation therapy to the whole breast now allows us to preserve disease-free survival for those who elected to keep their breasts.
Over the past 20 years, the standards of care have shifted from 6-7 weeks of treatment to 3-4 weeks using a hypofractionated model that involves daily whole-breast radiation. The most recent clinical trials have shown that whole-breast radiation can be delivered safely and effectively for select women in as few as five fractions with either whole or partial breast targeting. Additional research driven by the idea of “right sizing” radiation treatment has even shown that certain women may not need radiation at all.
This evolution in radiation therapy illustrates how our subspecialty is constantly working to improve survival and patient well-being, form deep connections with our patients, and push the boundaries of medical innovations.
We are proud to be radiation oncologists and happy to share more. Want to know more about what goes on in the basement? Come on down, we’re happy to show you around.
Dr. Giap is a resident in the department of radiation oncology at the University of Florida, Gainesville. Dr. Chino is an assistant attending in the department of radiation oncology at Memorial Sloan Kettering Cancer Center, New York. Neither reported any relevant conflicts of interest.
A version of this article first appeared on Medscape.com.