Artwork

Innhold levert av ASCO Education and American Society of Clinical Oncology (ASCO). Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av ASCO Education and American Society of Clinical Oncology (ASCO) eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
Player FM - Podcast-app
Gå frakoblet med Player FM -appen!

Oncology, Etc. – Dr. Patricia Ganz’ Evolutionary Treatment Of The Whole Patient

35:39
 
Del
 

Manage episode 376108976 series 1429974
Innhold levert av ASCO Education and American Society of Clinical Oncology (ASCO). Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av ASCO Education and American Society of Clinical Oncology (ASCO) eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.

There was time during the early 70’s when the field of oncology began to take hold where the singular focus was to extend the patient’s life. In this ASCO Education podcast, our guest was one of the first to challenge that notion and rethink methods that focused the patient’s QUALITY of life. Dr. Patricia Ganz joins us to describe her transition from cardiology to oncology (6:00), the moment she went beyond treating the disease and began thinking about treating the WHOLE patient (10:06) and the joy of the increasing numbers of patients who survive cancer (21:47).

Speaker Disclosures Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical Dr. Patricia Ganz: Leadership - Intrinsic LifeSciences Stock and Other Ownership Interests - xenon pharma, Intrinsic LifeSciences, Silarus Therapeutics, Disc Medicine, Teva, Novartis, Merck. Johnson & Johnson, Pfizer, GlaxoSmithKline, Abbott Laboratories Consulting or Advisory Role - Global Blood Therapeutics, GSK, Ionis, akebia, Rockwell Medical Technologies, Disc Medicine, InformedDNA, Blue Note Therapeutics, Grail Patents, Royalties, Other Intellectual Property - related to iron metabolism and the anemia of chronic disease, Up-to-Date royalties for section editor on survivorship

Resources If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed on the podcast page.

Pat Loehrer: Welcome to Oncology, Etc., an ASCO Education Podcast. I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University.

Dave Johnson: And I'm Dave Johnson, a Medical Oncologist at the University of Texas Southwestern in Dallas. If you're a regular listener to our podcast, welcome back. If you're new to Oncology, Etc., the purpose of the podcast is to introduce listeners to interesting and inspirational people and topics in and outside the world of oncology.

Pat Loehrer: The field of oncology is relatively new. The first person treated with chemotherapy was in the 1940s. Medical oncology was just recognized as a specialty during the 1970s. And while cancer was considered by most people to be a death sentence, a steady growth of researchers sought to find cures. And they did for many cancers. But sometimes these treatments came at a cost. Our next guest challenged the notion that the singular focus of oncology is to extend the patient's duration of life. She asked whether an oncologist should also focus on addressing the patient's quality of life.

Dave Johnson: The doctor asking that question went to UCLA Medical School, initially planning to study cardiology. However, a chance encounter with a young, dynamic oncologist who had started a clinical cancer ward sparked her interest in the nascent field of oncology. She witnessed advances in cancer treatment that seemingly took it from that inevitable death sentence to a potentially curable disease. She also recognized early on that when it came to cancer, a doctor must take care of the whole patient and not just the disease.

From that point forward, our guest has had a storied career and an incredible impact on the world of cancer care. When initially offered a position at the West LA VA Medical Center, she saw it as an opportunity to advance the field of palliative care for patients with cancer. This proved to be one of her first opportunities to develop a program that incorporated a focus on quality of life into the management of cancer. Her work also focused on mental, dietary, physical, and emotional services to the long-term survivors of cancer.

That career path has led to many accomplishments and numerous accolades for our guest. She is a founding member of the National Coalition for Cancer Survivorship, served as the 2004 Co-chair of ASCO's Survivorship Task Force, and currently directs UCLA's Cancer Survivorship Center of Excellence, funded in part from a grant from Livestrong. Our guest is Dr. Patricia Ganz.

Dr. Patricia Ganz: It's great to be with both of you today.

Dave Johnson: We always like to ask our guests a little about their background, where they grew up, a little about their family.

Dr. Patricia Ganz: Yes. I grew up in the city of Beverly Hills where my parents moved when I was about five years old because of the educational system. Unlike parts of the East Coast, we didn't have very many private schools in Los Angeles, and so public education was very good in California at that time. So I had a good launch and had a wonderful opportunity that many people didn't have at that time to grow up in a comfortable setting.

Dave Johnson: Tell us about your mom. I understand she was a businesswoman, correct?

Dr. Patricia Ganz: Yes, actually, my parents got married when my mom was 19 and my dad was 21. He was in medical school at the University of Michigan. His father and mother weren't too happy with him getting married before he could support a wife. But she worked in a family business in the wholesale produce business in Detroit. One of six children, she was very involved with her family in the business. And they were married, and then World War II started, my father was a physician in the military, so she worked in the family business during the war. After finally having children and growing up and being in Beverly Hills, she sat back and was a homemaker, but she was always a bit restless and was always looking for something to do. So wound up several years later, when I was in my early teens, starting a business with one of my uncles, an automobile parts business. They ultimately sold it out to a big company that bought it out.

Pat Loehrer: Where did your father serve in World War II?

Dr. Patricia Ganz: He was actually D-Day Plus 21. He was in Wales during the war. They had to be stationed and moved down into the south before he was deployed. I have my parents’ correspondence and letters from the war. He liberated some of the camps. Actually, as I have learned about the trauma of cancer and post-traumatic stress that happens in so many people, our military veterans, most recently, I think he had post-traumatic stress. He didn't talk very much about it, but I think liberating the camps, being overseas during that time, as it was for that silent generation, was very profound in terms of their activities.

He wound up practicing medicine, and Los Angeles had a practice in industrial medicine, and it was a comfortable life. He would work early in the morning till maybe three or four in the afternoon and then go to the gym, there were moonlighting physicians who worked in the practice. But I kind of saw an easy kind of medicine, and he was always very encouraging and wanted me to go into medicine -- that I could be an ophthalmologist or a radiologist, good job for a woman. But I didn't really see the tough life of some of the internists and other people who were really working more 24/7, taking care of patients in the way medicine used to be practiced.

Dave Johnson: Yeah. So you were interested in, early in your career, in cardiology. Could you tell us about that, and then a little bit more about the transition to oncology?

Dr. Patricia Ganz: I went away to college, I went to Harvard Radcliffe and I came home during the summers. And was interested in doing something during the summer so I actually in a pediatric cardiology research laboratory as a volunteer at UCLA for a couple of summers between my freshman and sophomore year then my sophomore and junior year. And then I actually got a California Heart Association Fellowship between my junior and senior year in college.

And this pediatric cardiology lab was very interesting. They were starting to give ketamine, it had an identification number, it wasn’t called ketamine. But they were giving it to children in the cardiac cath lab and then were very worried about whether it would interfere with measuring the pressures in the heart. So we had intact dogs that had catheters implanted in the heart, and the drug would be given to the animals and we would then measure their pressures in the heart.

That cardiology experience in 1970, the summer between my first and second year of medical school, the Swan-Ganz catheter was being tested. I worked at Cedars that summer and was watching them do the various studies to show the value of the catheter. And so by the time I was kind of finishing up medical school, I’d already invested all this time as an undergraduate. And then a little bit when I was in medical school and I kind of understood the physiology of the heart, very exciting. So that’s kind of where I was headed until we started my internship. And I don’t know if any of you remembered Marty Cline, but he was the oncologist who moved from UCSF to Los Angeles to start our hem-onc division. And very exciting, a wonderful bedside teacher.

And so all of a sudden, I’ve never been exposed to oncology and this was very interesting. But at the same time, I was rotating through the CCU, and in came two full-arrest patients, one of whom was a campus cop who was very obese, had arrested at his desk in the police station. And we didn’t have emergency vehicles to help people get on campus at that time. This was 1973 or 1974, something like that. And he came in full arrest, vegetable. And then another man had been going out of his apartment to walk his dog and go downstairs, and then all of a sudden his wife saw him out on the street being resuscitated by people. And he came in also in full arrest.

So those two experiences, having to deal with those patients, not being able to kind of comfort the families, to do anything about it. As well as taking care of patients in my old clinic who had very bad vascular disease. One man, extremely depressed with claudication and angina, all of a sudden made me feel, “Well, you know what? I’m not sure I really want to be a cardiologist. I’m not sure I like the acute arrest that I had to deal with and the families. And also, the fact that people were depressed and you couldn’t really talk to them about how serious their disease was.” Whereas I had patients with advanced cancer who came in, who had equally difficult prognoses, but because of the way people understood cancer, you could really talk about the problems that they would be facing and the end-of-life concerns that they would have.

So it was all of those things together that made me say, “Hmm.” And then also, Pat, you’ll appreciate this, being from Indiana, we were giving phase II platinum to advanced testicular cancer patients, and it was miraculous. And so I thought, “Oh my gosh, in my lifetime, maybe cancer is going to be cured! Heart disease, well, that’s not going to happen.” So that was really the turning point.

Pat Loehrer: When many of us started, we were just hoping that we could get patients to live a little bit longer and improve the response rate. But you took a different tack. You really looked at treating the whole patient, not just the disease. That was really a novel approach at the time. What influenced you to take that step forward?

Dr. Patricia Ganz: Well, it was actually my starting– it was thought to be in a hospice ward. It would turn out it was a Sepulveda VA, not the West LA VA, but in any case, we have two VAs that are affiliated with UCLA. And it was an intermediate care ward, and there was an idea that we would in fact put our cancer patients there who had to have inpatient chemotherapy so they wouldn't be in the acute setting as well as patients who needed to travel for radiation. Actually, the West LA VA had a hospice demonstration project. This is 1978. It's really the beginning of the hospice movement in England, then in Canada, Balfour Mount at Montreal and McGill was doing this. And so I was very much influenced by, number one, most of our patients didn't live very long. And if you were at a VA Hospital, as I was at that time, you were treating patients with advanced lung cancer, advanced colon cancer, advanced prostate cancer, other GI malignancies, and lung cancer, of course. So it was really the rare patient who you would treat for curative intent.

In fact, small cell lung cancer was so exciting to be treating in a particularly limited small cell. Again, I had a lot of people who survived. We gave them chemo, radiation, whole brain radiation, etc. So that was exciting. This was before cisplatin and others were used in the treatment of lung cancer. But really, as I began to develop this ward, which I kind of thought, “Well, why should we wait just to give all the goodies to somebody in the last few weeks of life here? I'm treating some patients for cure, they're getting radiation. Some of them are getting radiation and chemo for palliation.” But it was a mixed cancer ward. And it was wonderful because I had a team that would make rounds with me every week: a pharmacist, a physiatrist, a psychologist, a social worker, a dietitian. This was in 1978 or ‘79, and the nurses were wonderful. They were really available to the patients. It wasn't a busy acute ward. If they were in pain, they would get their medication as soon as possible. I gave methadone. It was before the days of some of the newer medications, but it was long-acting. I learned how to give that. We gave Dilaudid in between if necessary. And then we had Brompton solution, that was before there was really oral morphine.

And so the idea was all of these kinds of services should really be available to patients from the time of diagnosis until death. We never knew who was going to be leaving us the next few days or who was going to be living longer and receiving curative intent. We had support groups for the patients and their families. It was a wonderful infrastructure, something that I didn't actually have at UCLA, so it was a real luxury. And if you know the VA system, the rehabilitation services are wonderful. They had dental services for patients. We had mostly World War II veterans, some Korean, and for many of these individuals, they had worked and lived a good life, and then they were going to retire and then they got cancer. So this was kind of the sadness. And it was a suburban VA, so we had a lot of patients who were in the San Fernando Valley, had a lot of family support, and it was a wonderful opportunity for me to learn how to do good quality care for patients along the continuum.

Dave Johnson: How did you assemble this team? Or was it in place in part when you arrived, or what? Nobody was thinking about this multidisciplinary approach?

Dr. Patricia Ganz: I just designed it because these were kind of the elements that were in a hospice kind of program. And I actually worked with the visiting nurses and I was part of their boards and so forth. And UCLA didn't have any kind of hospice or palliative care program at that time. But because the VA infrastructure had these staff already, I didn't have to hire them, you didn't have to bill for anything. They just became part of the team. Plus there was a psychiatrist who I ultimately began doing research with. He hired a psychologist for the research project. And so there was kind of this infrastructure of interest in providing good supportive care to cancer patients. A wonderful social worker, a wonderful psychologist, and they all saw this patient population as very needy, deserving, and they were glad to be part of a team.

We didn't call it a hospice, we called it a palliative care unit. These were just regular staff members who, as part of their job, their mission was to serve that patient population and be available. I had never been exposed to a physiatrist before. I trained at UCLA, trained and did my residency and fellowship. We didn't have physiatry. For whatever reason, our former deans never thought it was an important physical medicine, it wasn't, and still isn't, part of our system.

Pat Loehrer: Many decisions we make in terms of our careers are based on singular people. Your dad, maybe, suggesting going into medicine, but was there a patient that clicked with you that said, "Listen, I want to take this different direction?" Or was it just a collection of patients that you were seeing at the VA? Is there one that you can reflect back on?

Dr. Patricia Ganz: I don't know if you all remember, but there was something called Consultation Liaison Psychiatry where, in that time, the psychiatrist really felt that they had to see medical patients because there were psychological and sometimes psychiatric problems that occurred on the medical ward, such as delirium. That was very common with patients who were very sick and very toxic, which was again due to the medical condition affecting the brain. And so I was exposed to these psychiatrists who were very behaviorally oriented when I was a resident and a fellow, and they often attended our team meetings in oncology on our service, they were on the transplant service, all those kinds of things. So they were kind of like right by our side.

And when I went to the VA, the psychiatry service there also had a couple of really excellent psychiatrists who, again, were more behaviorally focused. Again, you have to really remember, bless her heart, Jimmie Holland was wonderful as a psychiatrist. She and Barrie Cassileth were the kind of early people we would see at our meetings who were kind of on the leading edge of psychosocial oncology, but particularly, Jimmie was more in a psychiatric mode, and there was a lot of focus on coping. But the people that I began to work with were more behaviorally focused, and they were kind of interested in the impact of the disease and the treatment on the patient's life and, backwards, how could managing those kinds of problems affect the well-being of the patient.

And this one psychiatrist, Richard Heinrich, had gotten money from the VA, had written a grant to do an intervention study with the oncology patients who I was serving to do a group intervention for the patients and their families. But, in order to even get this grant going, he hired a project manager who was a psychologist, a fresh graduate whose name was Anne Coscarelli, and her name was Cindie Schag at that time. But she said, "I don't know much about cancer. I've got to interview patients. I've got to understand what's going on." And they really, really showed me that, by talking to the patient, by understanding what they were experiencing, they could get a better handle on what they were dealing with and then, potentially, do interventions. So we have a wonderful paper if you want to look it up. It's called the “Karnofsky Performance Status Revisited.” It's in the second issue of JCO, which we published; I think it was 1984.

Dave Johnson: In the early 90s, you relocated back to UCLA. Why would you leave what sounds like the perfect situation to go back to a site that didn't have it?

Dr. Patricia Ganz: Okay, over that 13 years that I was at the VA, I became Chief of the Division of Hem-Onc. We were actually combined with a county hospital. It was a wonderful training program, it was a wonderful patient population at both places. And we think that there are troubles in financing health care now, well, there were lots of problems then. Medicaid came and went. We had Reagan as our governor, then he became president, and there were a lot of problems with people being cared for. So it was great to be at the VA in the county, and I always felt privileged. I always had a practice at UCLA, which was a half-day practice, so I continued there, and I just felt great that I could practice the same wherever I was, whether it was in a public system, veteran system, or in the private system.

But what happened was, I took a sabbatical in Switzerland, '88 to '89. I worked with the Swiss International Breast Cancer Consortium group there, but it was really a time for me to take off and really learn about quality of life assessment, measurement, and so forth. When I came back, I basically said, "I want to make a difference. I want to do something at a bigger arena." If I just continue working where I am, it's kind of a midlife crisis. I was in my early 40s, and my office was in the San Fernando Valley at the VA, but my home was in West Los Angeles. One day I was in UCLA, one day I was at the VA, one day I was at the county, it was like, "Can I practice like this the next 20 years? I don't know that I can do this. And I really want to have some bigger impact.”

So I went to Ellen Gritz who was my predecessor in my current position, and I was doing my NCI-funded research at UCLA still, and I said, “Ellen, I really would like to be able to do research full time. I really want to make a difference. Is there anything available? Do you know of anything?" And she said, "Well, you know, we're actually recruiting for a position that's joint between the School of Public Health and the Cancer Center. And oh my goodness, maybe I can compete for that, so that's what I did. And it was in what was then the department called Health Services, it's now called Health Policy and Management. I applied, I was competing against another person who I won't name, but I got the position and made that move.

But again, it was quite a transition because I had never done anything in public health, even though UCLA had a school of public health that was right adjacent to the medical school. I had had interactions with the former dean, Lester Breslow, who I actually took an elective with when I was a first-year medical student on Community Medicine. So it kind of had some inklings that, of what I was interested in. I had actually attendings in my medical clinic, Bob Brook, a very famous health policy researcher, Sheldon Greenfield. So I'd been exposed to a lot of these people and I kind of had the instinctive fundamentals, if you will, of that kind of research, but hadn't really been trained in it. And so it was a great opportunity for me to take that job and really learn a lot and teach with that.

And then took, part of my time was in the cancer center with funding from the core grant. And then, within a year of my taking this position, Ellen left and went to MD Anderson, so all of a sudden I became director of that whole population science research group. And it was in the early ‘90s, had to scramble to get funding, extramural funding. Everybody said to me, "How could you leave a nearly full-time position at the VA for a soft money position?" But, nevertheless, it worked out. And it was an exciting time to be able to go into a new career and really do things that were not only going to be in front and center beneficial to patients, but to a much larger group of patients and people around the world.

Pat Loehrer: Of all the work that you have done, what one or two things are you most proud of in terms of this field?

Dr. Patricia Ganz: Recognizing the large number of people who are surviving cancer. And I think today we even have a more exciting part of that. I mean, clearly, many people are living long-term disease-free with and without sequelae of the disease. But we also have this new group of survivors who are living on chronic therapy. And I think the CML patients are kind of the poster children for this, being on imatinib or other newer, targeted agents over time, living with cancer under control, but not necessarily completely gone. And then melanoma with the immunotherapy, lung cancer, all of these diseases now being converted to ones that were really fatal, that are now enjoying long-term treatment.

But along with that, we all know, is the financial toxicity, the burdens, and even the ongoing symptoms that patients have. So the fact that we all call people survivors and think about people from the time of diagnosis as potentially being survivors, I think was very important. And I would say that, from the clinical side, that's been very important to me. But all of the work that I was able to do with the Institute of Medicine, now the National Academy of Medicine, the 2013 report that we wrote on was a revisit of Joe Simone's quality of care report, and to me was actually a very pivotal report. Because in 2013, it looked like our health care system was in crisis and the delivery of care. We're now actually doing a National Cancer Policy Forum ten-year follow-up of that report, and many of the things that we recommended, surprisingly, have been implemented and are working on. But the healthcare context now is so much more complicated.

Again, with the many diseases now becoming rare diseases, the cost of drugs, the huge disparities, even though we have access through the Affordable Care Act and so forth, there's still huge disparities in who gets care and treatment. And so we have so many challenges. So for me, being able to engage in the policy arena and have some impact, I think has been also very important to me.

Dave Johnson: 20 years ago, the topic of survivorship was not that common within ASCO, and you led a 2004 task force to really strengthen that involvement by that organization, and you also were a founding member of the National Coalition for Cancer Survivorship. I wonder if you might reflect on those two activities for us for a moment.

Dr. Patricia Ganz: In 1986, Fitzhugh Mullen, who in 1985 had written a really interesting special article for the New England Journal called "Seasons of Survivorship" - he was a young physician when he was found to have a mediastinal germ cell tumor and got very intensive chemotherapy and radiation therapy and survived that, but realized that there was no place in the healthcare system where he could turn to to get his questions answered, nor get the kind of medical care that was needed, and really wrote this very important article. He then, being somebody who was also kind of policy-oriented and wanting to change the world, and I would say this was a group of us who, I think went to college during the Vietnam era - so did Fitz - and we were all kind of restless, trying to see how we could make a difference in the world and where it was going.

And so he had this vision that he was going to almost develop an army of survivors around the country who were going to stand up and have their voices heard about what was going on. Of course, most people didn't even know they were a survivor. They had cancer treatment, but they didn't think about themselves as a survivor. And so he decided to get some people together in Albuquerque, New Mexico, through a support group that he had worked with when he was in the Indian Health Service in New Mexico. And there were various people from the American Cancer Society, from other support organizations, social workers, and a couple of us who are physicians who came to this meeting, some Hodgkin survivors who had been treated at Stanford and were now, including a lawyer, who were starting to do long term late effects work. And we gathered together, and it was a day and a half, really, just kind of trying to figure out how could a movement or anything get oriented to try and help patients move forward.

So that's how this was founded. And they passed the hat. I put in a check for $100, and that was probably a lot of money at that time, but I thought, well, this is a good investment. I'll help this organization get started. And that was the start. And they kind of ran it out of Living Beyond Cancer in Albuquerque for a few years. But then Fitz, who was in the Washington, DC. area decided they weren't going to be able to get organizations all over the country organized to do this, and they were going to have to do some lobbying. So Ellen Stovall, who was a Hodgkins survivor living in the Washington area, beginning to do policy work in this area, then became the executive director and took the organization forward for many years and championed this, got the Office of Cancer Survivors established at the NCI in the 1990s, and really did a lot of other wonderful work, including a lot of the work at the Institute of Medicine. She was very involved with the first Quality of Care report and then ultimately the survivorship report, the Lost and Transition report in 2005, 2006, I was on that committee. So that was really how things were evolving.

And by that time, I was also on the ASCO board, 2003 to 2006. And so all of these things were kind of coming together. We had 10 million survivors. That was kind of an important note and a lot of diseases now - lymphoma, breast cancer, multi-agent therapy had certain benefits, but obviously toxicities. We lived through the horrible time of high-dose chemotherapy and transplant for breast cancer in the ‘90s, which was a problem, but we saw a lot of toxicities after that. And so there were people living after cancer who now had sequelae, and the children obviously had been leading the way in terms of the large number of childhood cancer survivors. So this was this idea that the children were kind of the canary in the coal mine. We saw them living 20, 30 years later after their cancer diagnosis, and we were now beginning to see adults living 10, 15, 20 years later, and we needed to think about these long-term and late effects for them as well.

Dave Johnson: I'm glad you mentioned Fitz's article in the New England Journal that still resonates today, and if listeners have not read it, "Seasons of Survivorship" is a worthwhile five-minute read.

What do you think the most pressing issues and challenges in cancer survivorship care today?

Dr. Patricia Ganz: Many people are cured with very little impact. You can think of somebody with T1 breast cancer maybe needing endocrine therapy for five years, and lumpectomy radiation. That person's probably not going to have a lot that they're going to be worried about. But if they're a young breast cancer patient, say they're 35 or 40, you're going to get five years of ovarian suppression therapy. You're going to be put into acute menopause. You're going to lose bone density. You're going to have cardiac risk acceleration. You may have cognitive changes. You may have also problems with cognitive decline later. I mean, all of these things, the more intense treatments are associated, what we're really thinking about is accelerated aging. And so a lot of what I've been studying the last 20-25 years in terms of fatigue and cognitive difficulties are related to neuroinflammation and what happens when somebody has intensive systemic therapy and that accelerated process that's, again, not everyone, but small numbers of patients, could be 10-15-20%. So I worry a lot about the young patients. So I've been very focused on the young adult population who are treated intensively for lymphoma, leukemia, and breast. And that's, I think, something that we need to be looking out for.

The other thing is with the newer therapies, whether it's immunotherapy or some of the targeted therapies, we just don't know what the late effects are going to be. Where we're very schooled now in what the late effects of radiation, chemo, and surgery could be for patients, we just don't know. And another wonderful part of my career has been to be able to do quality-of-life studies within the Clinical Trials Network. I've been affiliated with NSABP, I was SWOG previously, but NSABP is now NRG Oncology doing patient-reported outcomes and looking at long-term outcomes in clinical trials. And I think we're going to need this for all of these new agents because we have no idea what the long-term toxicities are going to be. And even though it's amazing to have people surviving where they wouldn't have been, we don't know what the off-target long-term effects might be. So that's a real challenge right now for survivorship.

And the primary care doctors who we would want to really be there to orchestrate the coordinated care for patients to specialists, they are a vanishing breed. You could read the New England Journal that I just read about the challenges of the primary care physician right now and the overfilled inbox and low level of esteem that they're given in health systems. Where are we going to take care of people who really shouldn't be still seeing the oncologist? The oncologist is going to be overburdened with new patients because of the aging of the population and the many new diagnoses. So this is our new crisis, and that's why I'm very interested in what we're going to be looking at in terms of a ten-year follow-up report to the 2013 IOM report.

Dave Johnson: The industry-based trials now are actually looking at longer-term treatment. And the trials in which interest is cancer, we cut it down from two years of therapy down to nine weeks of therapy, looking at minimizing therapy. Those are difficult trials to do in this climate today, whereas the industry would just as soon have patients on for three to five years worth of therapy as opposed to three to five months. Talk a little about those pressures and what we should be doing as a society to investigate those kinds of therapies and minimizing treatments.

Dr. Patricia Ganz: Minimizing treatments, this is the place where the government has to be, because we will not be able to do these de-escalation studies. Otherwise, there will be countries like the UK, they will be able to do these studies, or other countries that have national health systems where they have a dual purpose, if you will, in terms of both financing health care and also doing good science. But I think, as I've seen it, we have a couple of de-escalation trials for breast cancer now in NRG Oncology, which is, again, I think, the role that the NCTN needs to be playing. But it's difficult for patients. We all know that patients come in several breeds, ones who want everything, even if there's a 1% difference in benefit, and others who, “Gee, only 1 out of 100 are going to benefit? I don't want that.” I think that's also the challenge. And people don't want to be denied things, but it's terrible to watch people go through very prolonged treatments when we don't know that they really need it for so long.

Dave Johnson: Pat and I both like to read. I'm wondering if there's something you've read recently that you could recommend to us.

Dr. Patricia Ganz: It's called A Gentleman in Moscow by Amor Towles. I do like to read historical fiction. This one is about a count at the time of the Bolshevik Revolution who then gets imprisoned in a hotel in Moscow and how constrained his life becomes, but how enriched it is and follows him over really a 50-year period of time and what was happening in the Soviet Union during that time. And of course, with the war in Ukraine going on, very interesting. Of course, I knew the history, but when you see it through the drama of a personal story, which is fictional, obviously it was so interesting.

My husband escaped from Czechoslovakia. He left in '66, so I had exposure to his family and what it was like for them living under communism. So a lot of that was interesting to me as well.

Dave Johnson: Thank you for joining us. It's been a wonderful interview and you're to be congratulated on your accomplishments and the influence you've had on the oncology world.

We also want to thank our listeners of Oncology, Etc., and ASCO Educational Podcast where we will talk about oncology, medicine and beyond. So if you have an idea for a topic or a guest you'd like us to interview, by all means, email us at education@asco.org. To stay up to date with the latest episodes and explore other ASCO educational content, please visit education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

  continue reading

198 episoder

Artwork
iconDel
 
Manage episode 376108976 series 1429974
Innhold levert av ASCO Education and American Society of Clinical Oncology (ASCO). Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av ASCO Education and American Society of Clinical Oncology (ASCO) eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.

There was time during the early 70’s when the field of oncology began to take hold where the singular focus was to extend the patient’s life. In this ASCO Education podcast, our guest was one of the first to challenge that notion and rethink methods that focused the patient’s QUALITY of life. Dr. Patricia Ganz joins us to describe her transition from cardiology to oncology (6:00), the moment she went beyond treating the disease and began thinking about treating the WHOLE patient (10:06) and the joy of the increasing numbers of patients who survive cancer (21:47).

Speaker Disclosures Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical Dr. Patricia Ganz: Leadership - Intrinsic LifeSciences Stock and Other Ownership Interests - xenon pharma, Intrinsic LifeSciences, Silarus Therapeutics, Disc Medicine, Teva, Novartis, Merck. Johnson & Johnson, Pfizer, GlaxoSmithKline, Abbott Laboratories Consulting or Advisory Role - Global Blood Therapeutics, GSK, Ionis, akebia, Rockwell Medical Technologies, Disc Medicine, InformedDNA, Blue Note Therapeutics, Grail Patents, Royalties, Other Intellectual Property - related to iron metabolism and the anemia of chronic disease, Up-to-Date royalties for section editor on survivorship

Resources If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed on the podcast page.

Pat Loehrer: Welcome to Oncology, Etc., an ASCO Education Podcast. I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University.

Dave Johnson: And I'm Dave Johnson, a Medical Oncologist at the University of Texas Southwestern in Dallas. If you're a regular listener to our podcast, welcome back. If you're new to Oncology, Etc., the purpose of the podcast is to introduce listeners to interesting and inspirational people and topics in and outside the world of oncology.

Pat Loehrer: The field of oncology is relatively new. The first person treated with chemotherapy was in the 1940s. Medical oncology was just recognized as a specialty during the 1970s. And while cancer was considered by most people to be a death sentence, a steady growth of researchers sought to find cures. And they did for many cancers. But sometimes these treatments came at a cost. Our next guest challenged the notion that the singular focus of oncology is to extend the patient's duration of life. She asked whether an oncologist should also focus on addressing the patient's quality of life.

Dave Johnson: The doctor asking that question went to UCLA Medical School, initially planning to study cardiology. However, a chance encounter with a young, dynamic oncologist who had started a clinical cancer ward sparked her interest in the nascent field of oncology. She witnessed advances in cancer treatment that seemingly took it from that inevitable death sentence to a potentially curable disease. She also recognized early on that when it came to cancer, a doctor must take care of the whole patient and not just the disease.

From that point forward, our guest has had a storied career and an incredible impact on the world of cancer care. When initially offered a position at the West LA VA Medical Center, she saw it as an opportunity to advance the field of palliative care for patients with cancer. This proved to be one of her first opportunities to develop a program that incorporated a focus on quality of life into the management of cancer. Her work also focused on mental, dietary, physical, and emotional services to the long-term survivors of cancer.

That career path has led to many accomplishments and numerous accolades for our guest. She is a founding member of the National Coalition for Cancer Survivorship, served as the 2004 Co-chair of ASCO's Survivorship Task Force, and currently directs UCLA's Cancer Survivorship Center of Excellence, funded in part from a grant from Livestrong. Our guest is Dr. Patricia Ganz.

Dr. Patricia Ganz: It's great to be with both of you today.

Dave Johnson: We always like to ask our guests a little about their background, where they grew up, a little about their family.

Dr. Patricia Ganz: Yes. I grew up in the city of Beverly Hills where my parents moved when I was about five years old because of the educational system. Unlike parts of the East Coast, we didn't have very many private schools in Los Angeles, and so public education was very good in California at that time. So I had a good launch and had a wonderful opportunity that many people didn't have at that time to grow up in a comfortable setting.

Dave Johnson: Tell us about your mom. I understand she was a businesswoman, correct?

Dr. Patricia Ganz: Yes, actually, my parents got married when my mom was 19 and my dad was 21. He was in medical school at the University of Michigan. His father and mother weren't too happy with him getting married before he could support a wife. But she worked in a family business in the wholesale produce business in Detroit. One of six children, she was very involved with her family in the business. And they were married, and then World War II started, my father was a physician in the military, so she worked in the family business during the war. After finally having children and growing up and being in Beverly Hills, she sat back and was a homemaker, but she was always a bit restless and was always looking for something to do. So wound up several years later, when I was in my early teens, starting a business with one of my uncles, an automobile parts business. They ultimately sold it out to a big company that bought it out.

Pat Loehrer: Where did your father serve in World War II?

Dr. Patricia Ganz: He was actually D-Day Plus 21. He was in Wales during the war. They had to be stationed and moved down into the south before he was deployed. I have my parents’ correspondence and letters from the war. He liberated some of the camps. Actually, as I have learned about the trauma of cancer and post-traumatic stress that happens in so many people, our military veterans, most recently, I think he had post-traumatic stress. He didn't talk very much about it, but I think liberating the camps, being overseas during that time, as it was for that silent generation, was very profound in terms of their activities.

He wound up practicing medicine, and Los Angeles had a practice in industrial medicine, and it was a comfortable life. He would work early in the morning till maybe three or four in the afternoon and then go to the gym, there were moonlighting physicians who worked in the practice. But I kind of saw an easy kind of medicine, and he was always very encouraging and wanted me to go into medicine -- that I could be an ophthalmologist or a radiologist, good job for a woman. But I didn't really see the tough life of some of the internists and other people who were really working more 24/7, taking care of patients in the way medicine used to be practiced.

Dave Johnson: Yeah. So you were interested in, early in your career, in cardiology. Could you tell us about that, and then a little bit more about the transition to oncology?

Dr. Patricia Ganz: I went away to college, I went to Harvard Radcliffe and I came home during the summers. And was interested in doing something during the summer so I actually in a pediatric cardiology research laboratory as a volunteer at UCLA for a couple of summers between my freshman and sophomore year then my sophomore and junior year. And then I actually got a California Heart Association Fellowship between my junior and senior year in college.

And this pediatric cardiology lab was very interesting. They were starting to give ketamine, it had an identification number, it wasn’t called ketamine. But they were giving it to children in the cardiac cath lab and then were very worried about whether it would interfere with measuring the pressures in the heart. So we had intact dogs that had catheters implanted in the heart, and the drug would be given to the animals and we would then measure their pressures in the heart.

That cardiology experience in 1970, the summer between my first and second year of medical school, the Swan-Ganz catheter was being tested. I worked at Cedars that summer and was watching them do the various studies to show the value of the catheter. And so by the time I was kind of finishing up medical school, I’d already invested all this time as an undergraduate. And then a little bit when I was in medical school and I kind of understood the physiology of the heart, very exciting. So that’s kind of where I was headed until we started my internship. And I don’t know if any of you remembered Marty Cline, but he was the oncologist who moved from UCSF to Los Angeles to start our hem-onc division. And very exciting, a wonderful bedside teacher.

And so all of a sudden, I’ve never been exposed to oncology and this was very interesting. But at the same time, I was rotating through the CCU, and in came two full-arrest patients, one of whom was a campus cop who was very obese, had arrested at his desk in the police station. And we didn’t have emergency vehicles to help people get on campus at that time. This was 1973 or 1974, something like that. And he came in full arrest, vegetable. And then another man had been going out of his apartment to walk his dog and go downstairs, and then all of a sudden his wife saw him out on the street being resuscitated by people. And he came in also in full arrest.

So those two experiences, having to deal with those patients, not being able to kind of comfort the families, to do anything about it. As well as taking care of patients in my old clinic who had very bad vascular disease. One man, extremely depressed with claudication and angina, all of a sudden made me feel, “Well, you know what? I’m not sure I really want to be a cardiologist. I’m not sure I like the acute arrest that I had to deal with and the families. And also, the fact that people were depressed and you couldn’t really talk to them about how serious their disease was.” Whereas I had patients with advanced cancer who came in, who had equally difficult prognoses, but because of the way people understood cancer, you could really talk about the problems that they would be facing and the end-of-life concerns that they would have.

So it was all of those things together that made me say, “Hmm.” And then also, Pat, you’ll appreciate this, being from Indiana, we were giving phase II platinum to advanced testicular cancer patients, and it was miraculous. And so I thought, “Oh my gosh, in my lifetime, maybe cancer is going to be cured! Heart disease, well, that’s not going to happen.” So that was really the turning point.

Pat Loehrer: When many of us started, we were just hoping that we could get patients to live a little bit longer and improve the response rate. But you took a different tack. You really looked at treating the whole patient, not just the disease. That was really a novel approach at the time. What influenced you to take that step forward?

Dr. Patricia Ganz: Well, it was actually my starting– it was thought to be in a hospice ward. It would turn out it was a Sepulveda VA, not the West LA VA, but in any case, we have two VAs that are affiliated with UCLA. And it was an intermediate care ward, and there was an idea that we would in fact put our cancer patients there who had to have inpatient chemotherapy so they wouldn't be in the acute setting as well as patients who needed to travel for radiation. Actually, the West LA VA had a hospice demonstration project. This is 1978. It's really the beginning of the hospice movement in England, then in Canada, Balfour Mount at Montreal and McGill was doing this. And so I was very much influenced by, number one, most of our patients didn't live very long. And if you were at a VA Hospital, as I was at that time, you were treating patients with advanced lung cancer, advanced colon cancer, advanced prostate cancer, other GI malignancies, and lung cancer, of course. So it was really the rare patient who you would treat for curative intent.

In fact, small cell lung cancer was so exciting to be treating in a particularly limited small cell. Again, I had a lot of people who survived. We gave them chemo, radiation, whole brain radiation, etc. So that was exciting. This was before cisplatin and others were used in the treatment of lung cancer. But really, as I began to develop this ward, which I kind of thought, “Well, why should we wait just to give all the goodies to somebody in the last few weeks of life here? I'm treating some patients for cure, they're getting radiation. Some of them are getting radiation and chemo for palliation.” But it was a mixed cancer ward. And it was wonderful because I had a team that would make rounds with me every week: a pharmacist, a physiatrist, a psychologist, a social worker, a dietitian. This was in 1978 or ‘79, and the nurses were wonderful. They were really available to the patients. It wasn't a busy acute ward. If they were in pain, they would get their medication as soon as possible. I gave methadone. It was before the days of some of the newer medications, but it was long-acting. I learned how to give that. We gave Dilaudid in between if necessary. And then we had Brompton solution, that was before there was really oral morphine.

And so the idea was all of these kinds of services should really be available to patients from the time of diagnosis until death. We never knew who was going to be leaving us the next few days or who was going to be living longer and receiving curative intent. We had support groups for the patients and their families. It was a wonderful infrastructure, something that I didn't actually have at UCLA, so it was a real luxury. And if you know the VA system, the rehabilitation services are wonderful. They had dental services for patients. We had mostly World War II veterans, some Korean, and for many of these individuals, they had worked and lived a good life, and then they were going to retire and then they got cancer. So this was kind of the sadness. And it was a suburban VA, so we had a lot of patients who were in the San Fernando Valley, had a lot of family support, and it was a wonderful opportunity for me to learn how to do good quality care for patients along the continuum.

Dave Johnson: How did you assemble this team? Or was it in place in part when you arrived, or what? Nobody was thinking about this multidisciplinary approach?

Dr. Patricia Ganz: I just designed it because these were kind of the elements that were in a hospice kind of program. And I actually worked with the visiting nurses and I was part of their boards and so forth. And UCLA didn't have any kind of hospice or palliative care program at that time. But because the VA infrastructure had these staff already, I didn't have to hire them, you didn't have to bill for anything. They just became part of the team. Plus there was a psychiatrist who I ultimately began doing research with. He hired a psychologist for the research project. And so there was kind of this infrastructure of interest in providing good supportive care to cancer patients. A wonderful social worker, a wonderful psychologist, and they all saw this patient population as very needy, deserving, and they were glad to be part of a team.

We didn't call it a hospice, we called it a palliative care unit. These were just regular staff members who, as part of their job, their mission was to serve that patient population and be available. I had never been exposed to a physiatrist before. I trained at UCLA, trained and did my residency and fellowship. We didn't have physiatry. For whatever reason, our former deans never thought it was an important physical medicine, it wasn't, and still isn't, part of our system.

Pat Loehrer: Many decisions we make in terms of our careers are based on singular people. Your dad, maybe, suggesting going into medicine, but was there a patient that clicked with you that said, "Listen, I want to take this different direction?" Or was it just a collection of patients that you were seeing at the VA? Is there one that you can reflect back on?

Dr. Patricia Ganz: I don't know if you all remember, but there was something called Consultation Liaison Psychiatry where, in that time, the psychiatrist really felt that they had to see medical patients because there were psychological and sometimes psychiatric problems that occurred on the medical ward, such as delirium. That was very common with patients who were very sick and very toxic, which was again due to the medical condition affecting the brain. And so I was exposed to these psychiatrists who were very behaviorally oriented when I was a resident and a fellow, and they often attended our team meetings in oncology on our service, they were on the transplant service, all those kinds of things. So they were kind of like right by our side.

And when I went to the VA, the psychiatry service there also had a couple of really excellent psychiatrists who, again, were more behaviorally focused. Again, you have to really remember, bless her heart, Jimmie Holland was wonderful as a psychiatrist. She and Barrie Cassileth were the kind of early people we would see at our meetings who were kind of on the leading edge of psychosocial oncology, but particularly, Jimmie was more in a psychiatric mode, and there was a lot of focus on coping. But the people that I began to work with were more behaviorally focused, and they were kind of interested in the impact of the disease and the treatment on the patient's life and, backwards, how could managing those kinds of problems affect the well-being of the patient.

And this one psychiatrist, Richard Heinrich, had gotten money from the VA, had written a grant to do an intervention study with the oncology patients who I was serving to do a group intervention for the patients and their families. But, in order to even get this grant going, he hired a project manager who was a psychologist, a fresh graduate whose name was Anne Coscarelli, and her name was Cindie Schag at that time. But she said, "I don't know much about cancer. I've got to interview patients. I've got to understand what's going on." And they really, really showed me that, by talking to the patient, by understanding what they were experiencing, they could get a better handle on what they were dealing with and then, potentially, do interventions. So we have a wonderful paper if you want to look it up. It's called the “Karnofsky Performance Status Revisited.” It's in the second issue of JCO, which we published; I think it was 1984.

Dave Johnson: In the early 90s, you relocated back to UCLA. Why would you leave what sounds like the perfect situation to go back to a site that didn't have it?

Dr. Patricia Ganz: Okay, over that 13 years that I was at the VA, I became Chief of the Division of Hem-Onc. We were actually combined with a county hospital. It was a wonderful training program, it was a wonderful patient population at both places. And we think that there are troubles in financing health care now, well, there were lots of problems then. Medicaid came and went. We had Reagan as our governor, then he became president, and there were a lot of problems with people being cared for. So it was great to be at the VA in the county, and I always felt privileged. I always had a practice at UCLA, which was a half-day practice, so I continued there, and I just felt great that I could practice the same wherever I was, whether it was in a public system, veteran system, or in the private system.

But what happened was, I took a sabbatical in Switzerland, '88 to '89. I worked with the Swiss International Breast Cancer Consortium group there, but it was really a time for me to take off and really learn about quality of life assessment, measurement, and so forth. When I came back, I basically said, "I want to make a difference. I want to do something at a bigger arena." If I just continue working where I am, it's kind of a midlife crisis. I was in my early 40s, and my office was in the San Fernando Valley at the VA, but my home was in West Los Angeles. One day I was in UCLA, one day I was at the VA, one day I was at the county, it was like, "Can I practice like this the next 20 years? I don't know that I can do this. And I really want to have some bigger impact.”

So I went to Ellen Gritz who was my predecessor in my current position, and I was doing my NCI-funded research at UCLA still, and I said, “Ellen, I really would like to be able to do research full time. I really want to make a difference. Is there anything available? Do you know of anything?" And she said, "Well, you know, we're actually recruiting for a position that's joint between the School of Public Health and the Cancer Center. And oh my goodness, maybe I can compete for that, so that's what I did. And it was in what was then the department called Health Services, it's now called Health Policy and Management. I applied, I was competing against another person who I won't name, but I got the position and made that move.

But again, it was quite a transition because I had never done anything in public health, even though UCLA had a school of public health that was right adjacent to the medical school. I had had interactions with the former dean, Lester Breslow, who I actually took an elective with when I was a first-year medical student on Community Medicine. So it kind of had some inklings that, of what I was interested in. I had actually attendings in my medical clinic, Bob Brook, a very famous health policy researcher, Sheldon Greenfield. So I'd been exposed to a lot of these people and I kind of had the instinctive fundamentals, if you will, of that kind of research, but hadn't really been trained in it. And so it was a great opportunity for me to take that job and really learn a lot and teach with that.

And then took, part of my time was in the cancer center with funding from the core grant. And then, within a year of my taking this position, Ellen left and went to MD Anderson, so all of a sudden I became director of that whole population science research group. And it was in the early ‘90s, had to scramble to get funding, extramural funding. Everybody said to me, "How could you leave a nearly full-time position at the VA for a soft money position?" But, nevertheless, it worked out. And it was an exciting time to be able to go into a new career and really do things that were not only going to be in front and center beneficial to patients, but to a much larger group of patients and people around the world.

Pat Loehrer: Of all the work that you have done, what one or two things are you most proud of in terms of this field?

Dr. Patricia Ganz: Recognizing the large number of people who are surviving cancer. And I think today we even have a more exciting part of that. I mean, clearly, many people are living long-term disease-free with and without sequelae of the disease. But we also have this new group of survivors who are living on chronic therapy. And I think the CML patients are kind of the poster children for this, being on imatinib or other newer, targeted agents over time, living with cancer under control, but not necessarily completely gone. And then melanoma with the immunotherapy, lung cancer, all of these diseases now being converted to ones that were really fatal, that are now enjoying long-term treatment.

But along with that, we all know, is the financial toxicity, the burdens, and even the ongoing symptoms that patients have. So the fact that we all call people survivors and think about people from the time of diagnosis as potentially being survivors, I think was very important. And I would say that, from the clinical side, that's been very important to me. But all of the work that I was able to do with the Institute of Medicine, now the National Academy of Medicine, the 2013 report that we wrote on was a revisit of Joe Simone's quality of care report, and to me was actually a very pivotal report. Because in 2013, it looked like our health care system was in crisis and the delivery of care. We're now actually doing a National Cancer Policy Forum ten-year follow-up of that report, and many of the things that we recommended, surprisingly, have been implemented and are working on. But the healthcare context now is so much more complicated.

Again, with the many diseases now becoming rare diseases, the cost of drugs, the huge disparities, even though we have access through the Affordable Care Act and so forth, there's still huge disparities in who gets care and treatment. And so we have so many challenges. So for me, being able to engage in the policy arena and have some impact, I think has been also very important to me.

Dave Johnson: 20 years ago, the topic of survivorship was not that common within ASCO, and you led a 2004 task force to really strengthen that involvement by that organization, and you also were a founding member of the National Coalition for Cancer Survivorship. I wonder if you might reflect on those two activities for us for a moment.

Dr. Patricia Ganz: In 1986, Fitzhugh Mullen, who in 1985 had written a really interesting special article for the New England Journal called "Seasons of Survivorship" - he was a young physician when he was found to have a mediastinal germ cell tumor and got very intensive chemotherapy and radiation therapy and survived that, but realized that there was no place in the healthcare system where he could turn to to get his questions answered, nor get the kind of medical care that was needed, and really wrote this very important article. He then, being somebody who was also kind of policy-oriented and wanting to change the world, and I would say this was a group of us who, I think went to college during the Vietnam era - so did Fitz - and we were all kind of restless, trying to see how we could make a difference in the world and where it was going.

And so he had this vision that he was going to almost develop an army of survivors around the country who were going to stand up and have their voices heard about what was going on. Of course, most people didn't even know they were a survivor. They had cancer treatment, but they didn't think about themselves as a survivor. And so he decided to get some people together in Albuquerque, New Mexico, through a support group that he had worked with when he was in the Indian Health Service in New Mexico. And there were various people from the American Cancer Society, from other support organizations, social workers, and a couple of us who are physicians who came to this meeting, some Hodgkin survivors who had been treated at Stanford and were now, including a lawyer, who were starting to do long term late effects work. And we gathered together, and it was a day and a half, really, just kind of trying to figure out how could a movement or anything get oriented to try and help patients move forward.

So that's how this was founded. And they passed the hat. I put in a check for $100, and that was probably a lot of money at that time, but I thought, well, this is a good investment. I'll help this organization get started. And that was the start. And they kind of ran it out of Living Beyond Cancer in Albuquerque for a few years. But then Fitz, who was in the Washington, DC. area decided they weren't going to be able to get organizations all over the country organized to do this, and they were going to have to do some lobbying. So Ellen Stovall, who was a Hodgkins survivor living in the Washington area, beginning to do policy work in this area, then became the executive director and took the organization forward for many years and championed this, got the Office of Cancer Survivors established at the NCI in the 1990s, and really did a lot of other wonderful work, including a lot of the work at the Institute of Medicine. She was very involved with the first Quality of Care report and then ultimately the survivorship report, the Lost and Transition report in 2005, 2006, I was on that committee. So that was really how things were evolving.

And by that time, I was also on the ASCO board, 2003 to 2006. And so all of these things were kind of coming together. We had 10 million survivors. That was kind of an important note and a lot of diseases now - lymphoma, breast cancer, multi-agent therapy had certain benefits, but obviously toxicities. We lived through the horrible time of high-dose chemotherapy and transplant for breast cancer in the ‘90s, which was a problem, but we saw a lot of toxicities after that. And so there were people living after cancer who now had sequelae, and the children obviously had been leading the way in terms of the large number of childhood cancer survivors. So this was this idea that the children were kind of the canary in the coal mine. We saw them living 20, 30 years later after their cancer diagnosis, and we were now beginning to see adults living 10, 15, 20 years later, and we needed to think about these long-term and late effects for them as well.

Dave Johnson: I'm glad you mentioned Fitz's article in the New England Journal that still resonates today, and if listeners have not read it, "Seasons of Survivorship" is a worthwhile five-minute read.

What do you think the most pressing issues and challenges in cancer survivorship care today?

Dr. Patricia Ganz: Many people are cured with very little impact. You can think of somebody with T1 breast cancer maybe needing endocrine therapy for five years, and lumpectomy radiation. That person's probably not going to have a lot that they're going to be worried about. But if they're a young breast cancer patient, say they're 35 or 40, you're going to get five years of ovarian suppression therapy. You're going to be put into acute menopause. You're going to lose bone density. You're going to have cardiac risk acceleration. You may have cognitive changes. You may have also problems with cognitive decline later. I mean, all of these things, the more intense treatments are associated, what we're really thinking about is accelerated aging. And so a lot of what I've been studying the last 20-25 years in terms of fatigue and cognitive difficulties are related to neuroinflammation and what happens when somebody has intensive systemic therapy and that accelerated process that's, again, not everyone, but small numbers of patients, could be 10-15-20%. So I worry a lot about the young patients. So I've been very focused on the young adult population who are treated intensively for lymphoma, leukemia, and breast. And that's, I think, something that we need to be looking out for.

The other thing is with the newer therapies, whether it's immunotherapy or some of the targeted therapies, we just don't know what the late effects are going to be. Where we're very schooled now in what the late effects of radiation, chemo, and surgery could be for patients, we just don't know. And another wonderful part of my career has been to be able to do quality-of-life studies within the Clinical Trials Network. I've been affiliated with NSABP, I was SWOG previously, but NSABP is now NRG Oncology doing patient-reported outcomes and looking at long-term outcomes in clinical trials. And I think we're going to need this for all of these new agents because we have no idea what the long-term toxicities are going to be. And even though it's amazing to have people surviving where they wouldn't have been, we don't know what the off-target long-term effects might be. So that's a real challenge right now for survivorship.

And the primary care doctors who we would want to really be there to orchestrate the coordinated care for patients to specialists, they are a vanishing breed. You could read the New England Journal that I just read about the challenges of the primary care physician right now and the overfilled inbox and low level of esteem that they're given in health systems. Where are we going to take care of people who really shouldn't be still seeing the oncologist? The oncologist is going to be overburdened with new patients because of the aging of the population and the many new diagnoses. So this is our new crisis, and that's why I'm very interested in what we're going to be looking at in terms of a ten-year follow-up report to the 2013 IOM report.

Dave Johnson: The industry-based trials now are actually looking at longer-term treatment. And the trials in which interest is cancer, we cut it down from two years of therapy down to nine weeks of therapy, looking at minimizing therapy. Those are difficult trials to do in this climate today, whereas the industry would just as soon have patients on for three to five years worth of therapy as opposed to three to five months. Talk a little about those pressures and what we should be doing as a society to investigate those kinds of therapies and minimizing treatments.

Dr. Patricia Ganz: Minimizing treatments, this is the place where the government has to be, because we will not be able to do these de-escalation studies. Otherwise, there will be countries like the UK, they will be able to do these studies, or other countries that have national health systems where they have a dual purpose, if you will, in terms of both financing health care and also doing good science. But I think, as I've seen it, we have a couple of de-escalation trials for breast cancer now in NRG Oncology, which is, again, I think, the role that the NCTN needs to be playing. But it's difficult for patients. We all know that patients come in several breeds, ones who want everything, even if there's a 1% difference in benefit, and others who, “Gee, only 1 out of 100 are going to benefit? I don't want that.” I think that's also the challenge. And people don't want to be denied things, but it's terrible to watch people go through very prolonged treatments when we don't know that they really need it for so long.

Dave Johnson: Pat and I both like to read. I'm wondering if there's something you've read recently that you could recommend to us.

Dr. Patricia Ganz: It's called A Gentleman in Moscow by Amor Towles. I do like to read historical fiction. This one is about a count at the time of the Bolshevik Revolution who then gets imprisoned in a hotel in Moscow and how constrained his life becomes, but how enriched it is and follows him over really a 50-year period of time and what was happening in the Soviet Union during that time. And of course, with the war in Ukraine going on, very interesting. Of course, I knew the history, but when you see it through the drama of a personal story, which is fictional, obviously it was so interesting.

My husband escaped from Czechoslovakia. He left in '66, so I had exposure to his family and what it was like for them living under communism. So a lot of that was interesting to me as well.

Dave Johnson: Thank you for joining us. It's been a wonderful interview and you're to be congratulated on your accomplishments and the influence you've had on the oncology world.

We also want to thank our listeners of Oncology, Etc., and ASCO Educational Podcast where we will talk about oncology, medicine and beyond. So if you have an idea for a topic or a guest you'd like us to interview, by all means, email us at education@asco.org. To stay up to date with the latest episodes and explore other ASCO educational content, please visit education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

  continue reading

198 episoder

Todos los episodios

×
 
Loading …

Velkommen til Player FM!

Player FM scanner netter for høykvalitets podcaster som du kan nyte nå. Det er den beste podcastappen og fungerer på Android, iPhone og internett. Registrer deg for å synkronisere abonnement på flere enheter.

 

Hurtigreferanseguide

Copyright 2024 | Sitemap | Personvern | Vilkår for bruk | | opphavsrett