The National Coalition for Cancer Survivorship began in 1986 with 23 people at a hotel in Albuquerque and a $100 contribution from Patricia A. Ganz, who recalls thinking: “I don’t think I’ve ever invested in anything that was so good.”
“These were just the baby steps,” Ganz, distinguished professor of health policy and management in the Fielding School of Public Health, distinguished professor of medicine in the David Geffen School of Medicine at UCLA, director of the Center for Cancer Prevention & Control Research at the Jonsson Comprehensive Cancer Center, and editor and chief of JNCI said to The Cancer Letter. “They decided they would try to get a bunch of people to come together who might be interested in this problem of post-treatment survivors and what they were experiencing.”
The meeting was partially convened by Fitzhugh Mullan, a physician who self-diagnosed his own germ cell tumor and published a landmark paper in The New England Journal of Medicine on the seasons of survival. He “focused on the fact that when he was treated, people didn’t expect him to live,” Ganz said.
“We were beginning to see cures in these diseases, and people felt lonely and left out, and then they went to their doctor, complaining about things, they did not receive any answers. I was the only physician who was there, aside from Mullan,” she said.
They were joined by Catherine Logan, who had led a support group for cancer patients in Albuquerque called Living Through Cancer. There were also social workers from the American Cancer Society, Harold Benjamin, head of what’s now called The Cancer Support Community, which was then called The Wellness Community, and many survivors, including Hodgkin’s disease survivors who were living with long-term effects of their treatment.
“The meeting was critical, because we developed the first definition of who is a cancer survivor, and the name that was chosen for the new organization was the National Coalition for Cancer Survivorship,” she said. “They originally thought they were going to be a consortium of support groups and organizations from grassroots from around the country.”
There was no consensus on what survivorship should look like at this time.
The mainstream thinking was “Oh, you should just be grateful to be alive. It’s too bad that you got a heart attack after radiation to your chest. But you survived,” Ganz said. “It’s too bad that you’re infertile.”
Ganz, who had at the time worked in an oncology treatment and palliative care unit, was one of the few oncologists who had decided to dedicate herself to long term post-treatment effects.
“I was an outlier. I would say, probably for the first 10 to 15 years of my career, I was presenting at meetings on quality of life, and my presentation was the last thing on the agenda for any kind of scientific meeting,” Ganz said. “Because people were realizing it was important. That it was nice to have, but not really mainstream.”
After a few years, NCCS pivoted toward policy, and began to change public perception of survivorship. Ellen Stovall, who was the executive director of NCCS from 1992 until 2008, came from a Washington political background and spearheaded this change.
“Within a few years Ellen Stovall took over to develop NCCS, as she had lobbying credentials, and really moved the organization to where it was, not this grassroots organization—which was hard,” Ganz said. “The idea going forward for NCCS was to see what we needed to have done for improving the healthcare delivery system, the government research, all of the entities that could make the after effects of cancer and other post-treatment considerations better and have the concerns of survivors be addressed.”
Organizations like the American Society of Clinical Oncology began recognizing the field of survivorship.
“There was a patient advocacy committee that I was on, and they wanted us to begin to incorporate patients into this activity,” Ganz said. “ASCO wasn’t focused on survivorship, but the idea that an alliance with patients and their advocates could be very important for oncologists.”
At the same time in 1992, Ganz made a career change and began focusing on prevention. She launched the High Risk Program at UCLA and played a crucial role in the Breast Cancer Prevention Trial.
“By this time, because a lot of my own research on rehabilitation and recovery after breast cancer was well established—I was getting NIH funding for that work—I said, well, I’m going to open the prevention trial at UCLA,” she said. “It was also that time that Susan Love came to UCLA and started our breast center. It was an exciting time.”
The idea of being able to go out on a street corner and say, ‘Hey, are you high risk? Come in so we can tell you about this great prevention trial we’re doing.’ It didn’t exist,” Ganz said. “I decided that it would be much better, as Susan was starting at the breast center, to start a high risk clinic, where we could in fact see women who had family histories or risk factors for breast cancer, and make recommendations for monitoring and risk reduction. It was before we had genetic testing.”
In 2006, Ganz was named director of the UCLA-LIVESTRONG Survivorship Center of Excellence.
“While primary prevention of cancer in somebody who doesn’t have cancer is really important, it’s actually important for the survivors,” Ganz said. “When I do survivorship care, I’m doing cancer prevention and control in people who’ve already had cancer who are at high risk for a second cancer.”
In Ganz’s mind, all of her work is interconnected.
“I see everything that I do through a cancer prevention and control lens, whether it’s not getting cancer, early detection and prevention. It’s the same thing we would do in a survivor,” she said. “How can we prevent the burden of a new cancer in someone who’s had cancer already, as well as prevent it from happening?”
“Living through that time, being involved in clinical trials, I’ve been very lucky, because I’ve been able to walk the world between being a card-carrying oncologist, being a clinical trialist, treating patients, but also seeing the after effects of what we do and studying the after effects,” she said.
Ganz spoke with Alexandria Carolan, a reporter with The Cancer Letter.
Patricia A. Ganz: I began my faculty appointment at a UCLA affiliated VA and an affiliated county hospital. When I was hired, the chief of medicine said, “We have this intermediate care ward at the VA. We know that hospice is an important emerging area and maybe you’d like to start a hospice unit.” Given this option, I began to look at the patients that we were hospitalizing there.
They were mostly men with lung cancer, colon cancer, advanced prostate cancer. We used this particular ward or unit to give inpatient chemotherapy, which was the normal thing if you had to give it by infusion over several days.
These men also would stay in the hospital for several weeks while getting their radiation at another VA facility. It was a mixture of patients and some did have advanced disease, who were in the last weeks or months of their life.
When I looked at what hospice was doing for people at the end of life, I basically said, Well, why should you wait to have the psychologist or the social worker or the rehab physician, or the nutritionist—the whole multidisciplinary team—just interact with somebody who’s in the last weeks or months of life?
When in fact, you could have pain, psychological distress, mobility problems anywhere after a cancer diagnosis. Even though many of these patients had advanced disease with metastatic cancer, it was clear we could benefit them by providing these services earlier.
I called my unit an oncology treatment and palliative care unit. We didn’t have the name hospice, which people in general associated with terminal care or end of life care. I was able to have wonderful nurses who provided excellent pain management and a wonderful multidisciplinary team that made rounds with me once a week.
We had support groups for the patients and their families. The VA had a lot of interest in providing this kind of comprehensive care. It was a wonderful experience for me.
PG: It’s hard to know. Because even the idea of a hospice where you would focus on the supportive care needs at the end of life, and really focusing on the symptoms, and not the disease, was not something that most oncologists talked about and thought about.
Because I was seeing these patients in my clinic, I was training residents and fellows about this, and was beginning to see that we were having advances with applying multi-agent therapy to patients with combined chemotherapy and radiation.
I remember some of the small-cell lung cancer patients that we treated with curative intent, with radiation and chemotherapy, and they were surviving. I was starting to see, even with those serious diseases, patients who were living longer and surviving. Then, what happened was I began to work with a psychiatrist and a psychologist who were really interested in understanding the day-to-day impact of cancer and its treatment on people’s lives.
That’s when I began a lot of the psychosocial research that’s characterized my career. This occurred through learning about their research and collaborating—they were developing a survey questionnaire and asking patients about what they were experiencing. I realized that there was a lot going on that we weren’t paying attention to as oncologists.
PG: No, I was an outlier. I would say probably for the first 10 to 15 years of my career, I was presenting at meetings on quality of life, and my presentation was the last thing on the agenda for any kind of scientific meeting. Because people were realizing it was important, that it was nice to have, but not really mainstream.
PG: It was end-of-life. There was a lot of effort to actually get Medicare to pay for the last six months of life with the Medicare Hospice Benefit. It took 10, 15 years for that to happen. At the VA adjacent to UCLA, there was a randomized trial going on to see if the hospice care made a difference in people’s quality of life.
Even for very end of life, last weeks of life, it was controversial if it was worth it. There was pretty little recognition of the suffering, not only of patients, but their families.
If you were having trouble getting people to buy into that at the end of life, think about how much harder it is to kind of say, well, we need to do this when people are going to live or even if they’re going to die, but live a long time with some morbidity from the treatment. We need to do something about it.
PG: It really wasn’t a coalition when we started. There were 23 of us, I believe, who met in a hotel in Albuquerque, and this was stimulated by the late Dr. Fitzhugh Mullan, who was a young adult cancer survivor.
He actually had a germ cell tumor in his chest that he discovered himself on an X-ray when he was a physician working on a New Mexico Indian reservation. Big mass, got treated with multi-agent chemotherapy and radiation, and then was living afterwards and dealing with all the sequelae from this.
He wrote a very landmark paper in the New England Journal of Medicine in 1985, which talked about the seasons of survival, and focused on the fact that when he was treated, people didn’t expect him to live. But here he was living, and not just living, but dealing and coping with the ongoing late effects of the treatment that he had, and realizing he wasn’t alone, there were other people out there.
He worked with another woman, Catherine Logan, who led a support group for cancer patients in Albuquerque called Living Through Cancer. They decided they would try to get a bunch of people to come together who might be interested in this problem of post-treatment survivors and what they were experiencing.
The people who attended, some of them were social workers from the American Cancer Society, Harold Benjamin, head of what’s now called The Cancer Support Community and was then called The Wellness Community, other people who were running support organizations—and many survivors. Quite a few of the people who were there were Hodgkin’s disease survivors who were living already with the long-term sequela.
We were beginning to see cures in these diseases, and people felt lonely and left out, and then they went to their doctor complaining about things, they did not receive any answers.
I was the only physician who was there aside from Mullan. I was invited because I was beginning to do systematic research on the long term and late effects of cancer in the patients in my clinics, working with a psychologist and psychiatrist who really taught me about how to do these things.
PG: No, these were just the baby steps. Essentially, at the end of this two-day meeting, Fitz passed the hat and said, “Well, who wants to contribute to getting this organization going?” And so, I wrote a check for $100. I don’t think I’ve ever invested in anything that was so good. $100 is not a lot of money today, but maybe it was then.
But I kind of said, “Well, you’ve got to put your money where your mouth is.” The meeting was critical, because we developed the first definition of who is a cancer survivor and the name that was chosen for the new organization was the National Coalition for Cancer Survivorship (NCCS).
They originally thought they were going to be a consortium of support groups and organizations from grassroots from around the country. That was going to be the mechanism for getting the word out and organizing.
But then, I think after several years with Cathy Logan trying to run this out of her nonprofit volunteer organization in New Mexico, Fitz decided we needed to hit the policy agenda in Washington. Within a few years, Ellen Stovall took over to develop NCCS as she had lobbying credentials, and really moved the organization to where it was, not this grassroots organization—which was hard.
Even today, when you say, “Oh, you’re a survivor,” people don’t think about themselves that way. The idea going forward for NCCS was to see what we needed to have done for improving the healthcare delivery system, the government research, all of the entities that could make the after effects of cancer and other post-treatment considerations better and have the concerns of survivors be addressed.
A lot of this was then done from the Silver Spring, MD, office of NCCS. There were many meetings that were convened. There was a lot of writing and other policy work that was done. Ellen was just a tremendous leader for the organization and that really got things on the policy agenda.
By the early ‘90s, ASCO began to recognize this. There was a patient advocacy committee that I was on, and they wanted us to begin to incorporate patients into this activity. ASCO wasn’t focused on survivorship, but the idea that an alliance with patients and their advocates could be very important for oncologists.
PG: We had several meetings, annual meetings, some in Los Angeles, some in Albuquerque, in various places with people attending who were running support groups and other organizations.
Some of them were especially for young survivors who didn’t feel that if they went to an average support group—again support groups were very popular at this time—if they went with a bunch of 65-year old’s, or 70 year old’s, their issues were not the same. There were breast and ovarian cancer survivors who felt their needs were special.
All of these advocacy and patient support organizations began then to think about the people who were living a long time in their organizations. These early meetings were a way to begin to focus on the post-treatment period of time. Whereas previously, almost everything was focused on getting your tissue diagnosis, finding the right doctor, dealing with the initial distress of cancer diagnosis.
All of these post-treatment patients felt left out because yeah, they had gotten through that, but what now? Again, that still was retained. There was big involvement of social workers and nurses at NCCS. Julia Rowland, who ultimately became the director of the Office of Cancer Survivorship at NCI, engaged early on with NCCS.
She and I were very active. We were working on various white papers and other kinds of things, and there were other physicians who also joined. There was a lack of awareness. Everybody thought, “oh, you should just be grateful to be alive. It’s too bad that you got a heart attack after radiation to your chest. But you survived.” Or, “It’s too bad that you’re infertile.”
We didn’t tell women who were getting chemotherapy that they might become infertile. It’s appalling. Of course, when I started out giving women chemotherapy for breast cancer, I certainly told them your periods are going to stop—but no men were doing that, and that was not routine.
Of course, now we have guidelines recommending fertility preservation discussions for both men and women. It’s not always done, but we are expected to do that now, because we expect them to survive; right? And that’s very life-affirming.
If you tell a young person with lymphoma, “This is a very serious disease, but go store some semen, I know you don’t have a partner now, but in the future if you want to have a kid go do that.” Well, doesn’t that mean something positive about what your outlook is going to be?
PG: I don’t know if it was the right time. Cancer was becoming an important disease with the establishment of the National Cancer Act 50 years ago. There was, within the National Cancer Act, a recognition that acute cancer treatments caused a lot of morbidity.
Actually, this was very influential for my early work, when I was trying to figure out what am I doing? I’m looking at the impact of the disease and treatment on people’s lives, and these are going to be survivors—and what are they experiencing?
There was something called cancer rehabilitation. That was part and parcel of the research funding supported by the National Cancer Act, and there were several rehabilitation demonstration projects across the United States. Those were important for actually describing the needs of cancer patients, usually at the time of diagnosis, but not so much post treatment.
Again, it’s this idea, well, we can do it up front for somebody newly diagnosed, who’s losing a limb for a sarcoma or something like that, or losing their breast with mastectomy. But what happens to them downstream?
And so again, a critical mass of more people surviving, especially younger people, began to move the needle for survivors twenty years later. If we look to Fran Visco and what she did, which again, didn’t really emerge until the 1990s. It took some time with the HIV epidemic and ACT UP and all, I think the grassroots piece, is from patients beginning to speak up and saying, I’m on the receiving end, I should have a say in this.
PG: I made a career change in 1992. I had actually been chief of the Hematology/Oncology Division up at the VA. I had taken a sabbatical in 1988 to ‘89.
I had been working in the early ‘80s with the psychologist and the psychiatrist as research collaborators. Quality of life was just emerging as an endpoint in clinical trials, and there was a lot of interest in how to measure it.
The questionnaire we developed during the 1980s, was actually one of the first quality of life instruments. So, I became interested in systematically measuring patient outcomes.
When I came back from the sabbatical, and I was kind of in midlife, I said, I like taking care of patients and teaching, but I think I can have a bigger impact if I could do research full-time. I was doing research part-time at UCLA, and then leading the clinical division where I was training fellows and so forth.
I made a career change and moved to the School of Public Health and the cancer center at UCLA, and also School of Medicine. It was really to focus more on doing research. Because of my involvement in doing quality of life assessments and talking about it and trying to get it integrated into clinical treatment trials that in 1990 I led an NCI workshop on the need to do quality of life assessment in clinical trials. This was not something that was standard.
The NSABP came to me and basically said, “We’re going to do this prevention trial, and people are very fearful about giving tamoxifen, a cancer drug, to healthy women, and we want you to be able to do the quality of life study for that trial.” I knew I was going to be doing that as a scientist to evaluate this, and thought about the opportunity to enroll patients in the trial as well.
By this time, because a lot of my own research on rehabilitation and recovery after breast cancer was well-established—I was getting NIH funding for that work—I said, well, I’m going to open the prevention trial at UCLA. It was also that time that Susan Love came to UCLA and started our breast center. It was an exciting time.
And the idea of being able to go out on a street corner and say, “Hey, are you high risk? Come in so we can tell you about this great prevention trial we’re doing.” It didn’t exist. All we had was family history maybe, and nobody looked at biopsies that were pre-cancerous or anything like that.
I decided that it would be much better, as Susan was starting at the breast center, to start a high risk clinic, where we could in fact see women who had family histories or risk factors for breast cancer, and make recommendations for monitoring and risk reduction. It was before we had genetic testing.
Of course, at the same time, while seeing high-risk patients clinically, it was easy to approach them about the prevention trial. Because that would be a good way to recruit patients.
Eventually, as the genetic testing for hereditary cancer became available through the first test developed by Myriad, we were able to incorporate a genetic counselor into our high risk program. We did genetic counseling and testing through a research protocol for a number of years. Then, of course it became a routine clinical practice.
Again, no one in the cancer center was doing this. I was associate director for population science, I was doing cancer control research. For me, actually, while primary prevention of cancer in somebody who doesn’t have cancer is really important, it’s actually important for the survivors.
I think that’s another thing to emphasize, that is, when I do survivorship care, I’m doing cancer prevention and control in people who’ve already had cancer who are at high risk for a second cancer. I see everything that I do through a cancer prevention and control lens, whether it’s not getting cancer, early detection and prevention. It’s the same thing we would do in a survivor.
PG: It was a difficult time, because we knew these tests were emerging, and again, at my institution it was very controversial. There was an ethicist who said, “You shouldn’t do these tests if we don’t know what they mean. And we don’t have a recommendation for therapy.”
Of course, people were doing preventive mastectomies and ovariectomies, and so forth. It was controversial. We did it through a research protocol, and people wanted to keep this information confidential. That’s why we did it through a research protocol.
As part of the research, people got the counseling from us free, as well as some testing, and we drew blood for research purposes from them, got their tissue specimens, we had questionnaires, and we wound up publishing papers from this research while also providing a confidential service. We contributed our data to many genetic research consortia. If you look at my bio and publications, you can see I have a lot of papers in genetics as a result.
But I kind of did it because there was no one else to fill that gap. And again, the whole idea of cancer genetic predisposition testing, which is common now and available in most cancer centers, and is available through online telemedicine counseling for patients, still is inadequate in terms of reaching everyone.
Again, for me, this was a no brainer in terms of extending what I was doing. Sometimes it looked like, oh, nothing’s connected, but in my mind, really everything was connected. How can we prevent the burden of a new cancer in someone who’s had cancer already, as well as prevent it from happening?
PG: I was ahead of the curve and, really, I think that all of this gave me a great opportunity to understand the fundamental biology of cancer, which was emerging.
Being a breast oncologist, I have seen a disease whose treatment has been extensively changed due to the advent of clinical genomics as well as contribution of clinical trials. Even when we think about the hormone receptor positive breast cancer, that’s the first target we ever had, and really understanding that disease and all this evolution has shaped my clinical experience.
What we began to do in terms of de-escalation of breast cancer surgical therapy was transformative, where women didn’t have to have a mastectomy. When I trained, I saw many women who had radical mastectomies, where you could see their ribs, and they had no arm function, and had edema, that’s what happened when I trained.
The whole idea that we didn’t have to remove the whole breast, or we didn’t have to do those big axillary dissections, or now that we look at the characteristics of the tumor on a biopsy and decide, we can forego lots of treatments or do more intensive treatments—is just an amazing feat in terms of the accomplishment of cancer care.
Living through that time, being involved in clinical trials, I’ve been very lucky because I’ve been able to walk the world between being a card-carrying oncologist, being a clinical trialist, treating patients, but also seeing the after effects of what we do and studying the after effects.
PG: He was a wonderful person, and just such a character, but just brilliant. He was one of my real heroes. I mentor people now and the young oncologists have no idea.
We used to go to ASCO, and we would wait with baited breath to hear his updates, or Gianni Bonadonna, and people like that, in lymphoma, and other diseases. It was just an amazing time, where we had incremental advances and we have big advances now, but some of those were really big advances as well.
PG: It’s very interesting. Everything that I had been doing up until then was research. I was well known, mostly for my research, and I had a very small clinical practice. I had a half day practice in the breast center where I saw high risk patients, and a half day in the oncology clinic.
Because again, 80, 90% of my time was devoted to research. But by accident, in some ways, I would get referred patients for their survivorship concerns.
I was studying fatigue, I was studying cognitive dysfunction, and clinicians in the community would refer me their patients who were having a difficult time. They knew that they could refer them to me for this problem, this post-treatment problem, and I wouldn’t take the patient away. I was really good at trying to help the patient, and in addition, I had research studies. We had studies for fatigue, we had studies for insomnia.
I had a big trial in the ‘90s where we were looking at managing menopausal symptoms in breast cancer survivors. I had these studies going on. I would see patients clinically, but also seeing the patients clinically helped me get ideas for the research. When the Lance Armstrong Foundation decided that they wanted to fund several cancer centers to develop a formal clinical program, we competed for it and were funded.
It was the first time there was official recognition at UCLA of a clinical program for survivors directed by me, because everything I did up until that time was informal. What was good about it was we had some infrastructure support, again, since it’s a new idea, the institution wasn’t interested, particularly in supporting. Maybe they looked for some philanthropic support, but they didn’t have institutional support for a real clinical program.
This funding was useful, because I had a nurse practitioner I could hire. I had a program manager. The pediatric oncologist, who I had mentored, was seeing young adult survivors of pediatric cancer in the pediatrics clinic still. They would come in with their mothers in the pediatrics and they were 30 years old!
She now could see them in an internal medicine clinic. They’d come with their girlfriend instead of their mom. They could talk about concerns about sexuality or fertility or things like that, and we had good psychosocial support for them as part of the survivorship program.
That was really a great opportunity. I think the Lance Armstrong Foundation kind of thought, Well, you’re going to fix it in five years. But across the country, whether it was Dana-Farber or Penn or the Hutch, we all said, “This is not so easy to do and we need more funding.”
They wound up funding us for about 10 years, although the last five years was mostly to focus on collaborative research. So, I don’t have any infrastructure funding now. I still see survivors for consultation. And even though it’s a center of excellence, it’s still just a name now where I’m seeing patients.
Fortunately, I get to see a lot of survivors of various kinds of cancers and it’s just very rewarding personally to be able to communicate with them about what they’ve experienced and then refer them to specialists who know something about the late effects of cancer treatments. Many of them haven’t had anyone attend to their psychosocial needs, which is the biggest piece, and we have very good support services here, which I link them to.
I also usually refer them to an internist to make sure they are getting general health promotion and disease preventive care. Because lots of times they’re not getting their other healthcare coordinated. It’s more of a consultative service I provide for most, but I also care for a lot of breast cancer survivors long term.
PG: What we’re seeing in terms of therapeutics everywhere is de-escalation. The childhood cancer treatment strategies these days are focused on de-escalation, because they have done a wonderful job documenting all the long-term challenges these cancer survivors face. The life expectancy of the many kids who survive is 15 years shorter than the average life expectancy.
The whole science right now of cancer survivor outcomes is focused on accelerated aging. I don’t know if anybody’s talked to you about this, but with the chemotherapy and the radiation that we give, we cause damage to tissues that leads to systemic inflammation, not only injury to the organ where we might radiate, but the chemotherapy and the radiation can lead to long term changes in the DNA throughout the body that may lead to accelerated aging.
A whole condition called frailty, where you become more fatigued, you lose physical function, etc., as well as having increased comorbid conditions arises. This reflects premature or accelerated aging. Something that is expected to occur in the very elderly population
The childhood cancer clinical trialists are working very hard to reduce the exposure to some treatments. This is going on in leukemia and childhood lymphoma and so forth, such that they hope that the long-term survival gains will not just increase the length of survival, but will reduce the kind and number of comorbidities these survivors experience. They are the lead groups looking at this.
However, we have only a small number of children diagnosed with cancer each year. Similar things are going on in adults. I’ve been very passionate in the last 10, 20 years, about the adolescent and young adult population with cancer.
I wound up taking care of a lot of young women with breast cancer. If you’re a 35-year-old or a 30-year-old, and we treat you for breast cancer, the cancer is often at a more advanced stage at diagnosis, because those women don’t get screened (they are too young).
As a result, they get more intensive treatment including surgery, chemotherapy, radiation, endocrine therapy. They have no other health conditions at that time, but because of the intensity of treatment, they are going to be liable to have some of these same increased late effects that we see in children who survive.
Doing health promotion, disease prevention, identifying who’s most vulnerable for these late effects, looking at the biology of the late effects, is very, very important. Something that I really focus on is host factors.
Can we figure out, if we give 100 people the same recipe of drugs and radiation, the majority actually do pretty well. But why do 15 or 20% not do well? And what can we do for them to mitigate those effects?
The last 20 years I’ve spent time in my research looking at the biology of some of these late effects. And I think that’s where we will be able to hopefully refine and tailor treatments. You don’t want to give up the cure, but we have to figure out a way to responsibly improve the situation so that not everybody’s exposed to a one size fits all treatment. That’s the precision health idea, so precision treatment to reduce that morbidity.
PG: I’m also doing some research now to try and figure out how—I’m in health policy and I’m very concerned about how we’re going to manage providing health care for the large number of survivors—17 million now, maybe 25 million in another 10 years or so. It’s a big issue.
How are we going to care for them in the situation that we have? Oncologists are good in terms of having more familiarity, but we need to be able to have other generalists or others, maybe there will be internists who will become survivor specialists, there are some of them around already, where they’re familiar enough with the treatment exposure so that they can be on the lookout for these things.
This is where the patients really feel lost. Many survivors actually tell us that it’s more difficult managing the after effects of their treatment sometimes, than it was while they were getting the cancer treatment.
Maybe it’s like childbirth, they forgot it was painful, but they have so many things that are going on as they survive the cancer long term. Particularly the younger ones because it’s happening to them when they’re 35 or 40 years old, and they got treated in their 20s. Most other 35 and 40-year olds are not having to deal with so many health issues.