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Ann H. Partridge, MD, MPH: Hello. I'm Dr Ann Partridge from the Dana-Farber Cancer Institute. Welcome to Medscape's InDiscussion series on cancer survivorship. Today, we'll discuss the state of cancer survivorship research and care, which is an increasingly important issue given that the vast majority of people diagnosed with cancer today will live through and beyond the cancer, often for many years. But first, let me introduce you to my guest, Dr Patricia Ganz. Dr Ganz is a medical oncologist and director of the Center for Cancer Prevention and Control Research at the UCLA Jonsson Comprehensive Cancer Center in Los Angeles and a pioneer in the assessment of quality of life in cancer patients. Welcome to InDiscussion, Patti.
Patricia A. Ganz, MD: It's great to be with you, Ann.
Partridge: It's so great to have you on this discussion in particular. I ask each of my guests, what brought you to this specialty? What first drew you in? But I'll ask you, what made you create this specialty? Because you were at the forefront of defining cancer survivorship as a field.
Ganz: Well, in the early days, way back in the late 1970s and early 1980s, most of the people we treated at the VA hospital were men with lung, colon, and prostate cancer, all with pretty advanced disease, and they didn't live very long. I ran a palliative care hospice supportive care rehab unit and was able to do a lot for these patients. But gradually over time, in my practice, both at the county hospital and at UCLA, I was beginning to see more people coming back after completing often very complex and morbid surgical radiation and chemotherapies complaining that they were suffering, but there was no disease. Confronted with these patients, I had to say, "Gee, don't we have to do something for them? Don't we have to care for them?" They really taught me a lot. That's how I got interested in making sure people who had finished their treatment would have as good a life as possible.
Partridge: I love that you meet the patients where they are, and as you get more survivors, you see the new and emerging needs. You and I both focus on breast cancer a lot. And I think back then, especially, there was kind of the [rushed] treatment approach, even for people who were highly likely to be cured. Is that where you started to see the aftermath?
Ganz: Yes. I mean, looking at women who had mastectomies with their ribs showing and arm mobility that was horrible — focusing on rehabilitation was really important then. Patients with sarcomas had limb amputations. We now do preservation. So there were tremendous morbidities. And of course, cancer treatment has improved so much that we have benefited from doing limb sparing, voice salvage for people with laryngeal cancer, and so on. But it means you give much more intensive chemoradiation to preserve these organs. So there's still morbidity, even though you're not doing huge surgical procedures. There's a cost, and that's what we have to deal with. It's the price of the cure. And we have to be cognizant that life after a cancer diagnosis will never be the same for most people.
Partridge: Let's expand on that a little bit. I live in the breast cancer world, but I try to develop programs for patients with all kinds of cancer history. Tell me, where are the populations growing the most? Who are the largest groups of cancer survivors, and which populations are growing? Obviously, we wish nobody had cancer, but we want everybody, if they have cancer, to become a part of the survivor population. What are we seeing there from a demographic standpoint?
Ganz: There are two important issues. First, we have what's called the silver tsunami, which is 10,000 people turning 65 every day from the baby boomer generation. And they're going to be living probably into their 70s and 80s. They're going to be screened for cancer because all of our screening guidelines say you get screened for colon cancer, lung cancer, and breast cancer, and many of these screenings are going to pick up early-stage disease, which is going to be curable. So they're going to be living a long time and, again, there will be a huge increase in the incidence of cancer just because people are getting older. It won't be an increase if you control it for the denominator of age but it will be an increase in the absolute number of people. We're also worried about younger folks. We are now seeing an increase in early breast cancer, an increase in early colon cancer, and many obesity-related cancers like liver cancer, myeloma, thyroid cancer, and so forth. We know that obesity is a big problem in children and young adults. We see this because of diseases like diabetes that are occurring much earlier in these individuals. And we are going to see that cancer is a collateral piece to all of this. So, we're going to be watching these kinds of statistics as well in younger people, meaning people under 50 years of age.
Partridge: I'm going to get back to health behaviors in a few minutes and why people at higher risk of getting cancer might lead them to a second cancer. But one of my favorite parts in the past decade about talking about cancer survivors is the other group of survivors of diseases where it used to be such an intractable problem — like melanoma that had metastasized and some lung cancers. Now, we also see large groups of these patients living even with a history of metastatic disease in this long-term survivor phase. What's your take on that? And how do we need to be thinking differently as we take care of these patients?
Ganz: A lot of us positioned ourselves doing survivorship following Fitzhugh Mullan's piece on the seasons of survival and looking at people who were posttreatment who did not have a recurrence but were living with morbidities. That was a really important call to action. But you're absolutely right. The large number of individuals living with diseases that are metastatic at diagnosis but that can be controlled for very long periods of time is a whole new population. Think about patients with chronic myelogenous leukemia who are on targeted therapies indefinitely. Even think about our patients who have metastatic breast cancer that's HER2 positive who are on indefinite targeted therapies. It is a new world we are living through and trying to figure out how to manage not only the side effects of the disease and having frequent healthcare visits but also the financial toxicity of living with cancer as a chronic disease while on medication.
Partridge: It's a tremendous burden on the patient, their, family and the healthcare system, as well as society. Let's focus a few minutes on the special needs of survivors, which is distinct from the needs of people in the active therapy component of their care. This is an area I know you focused on — secondary cancer prevention and the risk for second malignancies, as well as the risk for comorbid conditions in other important organs.
Ganz: I have my three P's for survivorship care. The first is palliation. We have to disassociate palliation from end-of-life care because palliative care is really symptom management wherever a person is in any disease process. For survivors, they're often left with neuropathy, pain, psychosocial distress, and many other symptoms that just won't go away, as well as fatigue, cognitive difficulties, and insomnia, which can be very disruptive to ongoing living. If they're a caregiver for an older person in their family, taking care of their families can be very difficult. We have a lot of guidelines that give us advice on how to manage fatigue, insomnia, pain, psychological distress, and so forth, and some symptoms that we don't have relief for like neuropathy, which is very difficult to manage. But we need to acknowledge when a survivor has a symptom that it is not just all in their head and that they shouldn't just be grateful to be alive. They've been through an arduous journey with their treatments, and these are things that we as clinicians and oncologists have to recognize we were partially responsible for. That's the palliation.
Then there's prevention, which I think is really important, and it is particularly relevant for second malignancies. It's amazing that even with what we know about genetic testing for hereditary cancers, many cancer survivors — breast cancer and colon cancer are good examples — have not been tested to see if they have a hereditary predisposition gene. They've been treated for their cancer, but it's now 10 years later, and nobody has updated genetic testing if they had it to begin with, or they haven't had genetic testing at all. We know these predisposition genes may lead to second or third cancers, which we could be screening for. Or in the case of colon cancer predisposition genes, this could mean removing the uterus in a woman who may be carrying one of these genes even if she already had colon cancer. It's very important not to miss these opportunities. Often we need to do screening at an earlier age because people who have had radiation exposure, particularly to visceral organs, could be at risk for lung cancer, esophageal and upper gastrointestinal cancers, and colon cancers. I've seen Hodgkin's survivors with radiation-induced colon cancer. And skin cancers are, again, much more common. We need to put this on our list as something that needs to be screened for and alert patients to it, because often they will be the first to notice something along with screening and early detection. For women who may have had chest radiation in their teens, 20s, and early 30s, [we should] consider tamoxifen for breast cancer prevention. We need to think of [cancer survivors] as a truly high-risk group, which they are. And the data do show if you're over 65, there's about a 30% chance you'll get a second cancer if you're a survivor, and if you're younger, it could be 15%-20%. But still, that's over the lifetime, and it means being on the lookout.
And finally, health promotion. We know that comorbidities are much more common in survivors of cancer when you compare them to age-matched general population samples, and we know that these patients may be at higher risk for very serious problems such as coronary artery disease after radiation to the chest or the anthracycline cardiotoxicity that may occur. And in breast cancer where we both work, we don't exactly know why, but women with breast cancer, even if we didn't use cardiotoxic drugs or radiation, seem to have a higher risk for cardiovascular disease compared to age-matched women, even though we can't really identify the risk factors. Looking out for that may be important. And I know you and I are very interested in early menopause that may be provoking some of this in women with breast cancer.
Partridge: Many of our treatments, which we give with good intention to create more survivors — hopefully we will only give them if they're truly worth the bang for the buck. We need to manage the long-term late effects. And as you alluded to, these treatments can be hormonal, chemotherapy, radiation therapy, or surgery — all of the modalities we frequently use and sometimes in combination, depending on the cancer. This is so important. I now want to touch on that big organ in the middle of people's chests — the heart. It is super important that we take care of our hearts. Heart disease is the number one killer of Americans, both men and women. Most people are going to live through their cancer and are therefore more likely to die of heart disease. That's what I frequently tell my patients when I'm trying to get them to exercise. How are you thinking about this, both in the care of your patients as well as in your recent research endeavors?
Ganz: It's very difficult for many of our patients to realize they are going to survive and that their heart is going to be the problem. Sometimes when I've started to talk about what I would call energy balance — weight maintenance and physical activity — because the two really go hand in hand, there's a lot of inertia. Maybe when patients make it to eight or 10 years, they'll bite the bullet and do something about it. But I inform them and have them work with a cardio-oncologist or at least an oncologist who understands there is earlier-onset cardiovascular disease in these individuals and who will perhaps use medications like statins at an earlier time point because of this higher risk and also blood pressure control. All of these things are very important. Smoking and tobacco control is very, very important. But the data do not suggest that survivors are more attracted to these lifestyle interventions than the general public. So it's the issue of how we motivate people and give them the enthusiasm, if you will, for making these lifestyle changes. It's not easy for anyone. And when survivors are burdened with neuropathy and they're worried about falling, getting them out there exercising may be difficult. Maybe they have to work with a trainer or maybe they have to figure out an exercise regimen that will fit whatever the constraints they have from the cancer treatment.
Partridge: I've heard my colleague Jennifer Ligibel, who does a lot of research in this area, say she wants to be able to write a prescription for cancer rehab the way we write a prescription for cardiac rehab and it's reimbursed. You'd never think of sending someone out after a heart attack to go fly, be free, exercise, and take care of their health behaviors on your own. And yet we seem to do that in the general population after a significant cancer diagnosis and treatment.
Ganz: We've had a hard time. When I first started out, I called what I was doing "cancer rehabilitation" because it did come out of the early National Cancer Act rehabilitation programs. But what happened was Medicare, in its wisdom, decided not to reimburse cancer as a diagnosis for rehabilitation. If we could reinvigorate that as an activity and make cancer rehabilitation part of that prescription, it would be very important. But it's hard — the reimbursement for this and the organization of good rehab for survivors is not frequently available.
Partridge: Yes, it's very challenging. I actually pretend to be writing a prescription, and sometimes I write down and print out how much I want my patients to exercise or get that energy balance we're seeking. There is a lot of research going on right now on trying to not just see that this is important but also to learn how we can get patients to be motivated and get the resources and coaching they need for the needed health behaviors and modifications. We know that behavior changes are some of the hardest. This leads me to one of the biggest buckets of survivorship care, which you alluded to at the beginning of this discussion — the psychosocial burden. It's emotional for the patient, and many people just think about that. But there's just so much more in the patient's system — their loved ones, family, brothers, sisters, children, and sometimes workplaces. Then there's the personal financial toxicity you also alluded to, as well as the system toxicities. It feels very overwhelming when you think about it. How do you chunk that out both in practice and care?
Ganz: It's very important for patients to know that we as clinicians are aware this is a problem. We need to do regular assessments of how patients are doing in terms of their emotional well-being. And while distress screening has been popularized as something that should be implemented in care, it is not routinely used. We need to ask patients about how they are doing using a screening instrument. I happen to use the PHQ-9 (Accuracy of Patient Health Questionnaire-9) in my survivorship consults because I score it and see if a patient has any evidence of depression, and it also has questions about fatigue, sleep, and eating. I can just look at the questionnaire and say, "Oh, you know, you're not depressed, but I see you're having problems in these other areas. And these are things we can do something about." I think patients often feel they don't want to bother their doctors. Their doctors are too busy. They see all the sick patients in the waiting room, and they don't want to take up their time. So there's kind of a veil of silence that goes on when in fact it's only when they're very seriously depressed or worried that they bring these things up. So we need to be proactive. This has to do with their sex lives, intimate relationships, and all sorts of things that unravel sometimes after a cancer diagnosis. Maybe we can't fix these things, but we can refer them to someone who can help them. It's a major gap in the care that we provide.
Partridge: You're absolutely right. And the answer, at least to understanding it better, is screening. We know that patients are more likely to bring up these issues when they're asked. And sometimes in the middle of a busy clinic, it's hard, especially for oncologists, to not necessarily remember but want to bring something up if the patient seems okay. If they're not complaining, it's a little bit of reactive vs proactive care, especially when it comes to things like sexual health, too.
Ganz: I used to call it the eyeball Karnofsky. I did an early paper that I published with a psychologist and psychiatrist where I was rating the Karnofsky scale, and they were rating the Karnofsky scale, and they were always much lower than me. I asked them how they rated their Karnofsky score. Because it is an important scale at least in terms of performance status, and we used the Eastern Cooperative Oncology Group (ECOG) Performance Status, as well. And they said, "We just ask them questions about what they were doing. We tend to say that if they're dressed well, they drove here, and they're smiling, they're doing okay. But, if you ask a few questions, you find out that things are not quite so good." I also wanted to mention that I was working with some younger cancer survivors a few years ago, and one young woman who was a leukemia survivor six, seven, or eight years out from treatment, said it took her more effort to manage her posttreatment comorbid conditions than her health when she had leukemia. This was pretty shocking when you think that she was hospitalized for a month or more and had many years of treatment. The bottom line is that people are often left with a great health burden, which, again, we don't think about. We just think about the fact that they're disease free.
Partridge: I am struck by this particularly for certain experiences like bone marrow transplant or multimodality therapy or therapies to a particularly sensitive area of the body. It's fascinating. Many of us do have specialized survivorship clinics where we can send our patients. And that's a wonderful thing where somebody can just pay attention to all of the treatment-related toxicities and long-term late effects and the psychosocial impact. But what kinds of resources are out there that you're aware of for people who don't have the luxury of being able to get into a big cancer center or a larger survivorship program?
Ganz: I think the big fear most oncologists have is that it's kind of a don't ask, don't tell situation. For instance, for the psychosocial services, if I don't have someone I can refer the patient to, I'm afraid to ask about it. Oncologists are much more willing to ask about physical symptoms and things like insomnia or pain where they can prescribe something. But my experience is that they're just not familiar with many of the behavioral intervention resources, and the integrative oncology resources are phenomenal. Many times these resources, including cognitive-behavioral therapy, are very effective in terms of treating fatigue and insomnia. All of these things have a really rich evidence base. We need to encourage knowing your surroundings and knowing the resources in your community. Many community cancer centers have a lot of these resources available. It is also important to link them to some form of assessment you feel comfortable doing because if a patient has a positive or affirmative response, you can offer them something that will be really appreciated.
Partridge: I think that's really good advice. Patti, this has been incredible. I always love speaking with you, especially about this area, which again, you really helped create and support and foster for so many of us. Today, we've been talking with Dr Patricia Ganz about cancer survivorship, a field that emerged over the past 30 years and is fortunately really growing in terms of our understanding and the research going on to inform how we can better care for our patients. This population is growing in many different ways, including people living with cancer in a new model of survivorship. Thank you for tuning in. Please take a moment to download the Medscape app to listen and subscribe to this podcast series on cancer survivorship. This is Dr Ann Partridge for InDiscussion.
Resources
Cancer Survivorship Guidelines
Cancer Treatment and Survivorship Statistics, 2022
Breast Cancer Statistics, 2022
Seasons of Survival: Reflections of a Physician With Cancer
The 'Three Ps' of Cancer Survivorship Care
Practical Clinical Interventions for Diet, Physical Activity, and Weight Control in Cancer Survivors
Karnofsky Performance Status Revisited: Reliability, Validity, and Guidelines
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Cite this: Cancer Survivorship Research: Improving Patient Care for a Growing Population of Cancer Survivors - Medscape - Apr 26, 2023.
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