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In this podcast, Dr. Allison Magnuson talks to Beverly Canin, a cancer survivor and patient advocate, about the importance of specialized cancer care for people over 65. They discuss how the health care team can assess and provide specific support for people over 65, why people over 65 should be included in cancer research, and tips for people with cancer in this age group.

Dr. Magnuson is an associate professor of medicine and a board-certified medical oncologist and geriatrician at the University of Rochester Medical Center. Ms. Canin is a patient advocate, research partner, and the co-chair of the Cancer and Aging Research Group’s Stakeholders for Care in Oncology & Research for Our Elders Board, or SCOREboard. Dr. Magnuson is the Cancer.Net Associate Editor for Geriatric Oncology, and Ms. Canin is an advisory panelist on the Cancer.Net Editorial Board. You can view their disclosures at Cancer.Net. 

Dr. Magnuson: Hi, I'm Dr. Allison Magnuson. I'm a geriatric oncologist from the University of Rochester, and I'm here with a good colleague and friend of mine, Ms. Beverly Canin, who is a patient advocate that I work closely with in geriatric oncology. And we're here today to have a conversation about why geriatric oncology is important, and what advice Beverly would have for older adults with cancer as they're navigating the cancer care process. Beverly and I do not have any relevant relationships to disclose. Good morning, Beverly, how are you?

Beverly Canin: Good morning. I'm very happy to be here. I’m well, thank you. And looking forward to our conversation.

Dr. Magnuson: Me too. Beverly, I thought maybe we could start by you just sharing your story about how you became involved as an advocate in geriatric oncology. I think it's such an interesting story. So I'd love the listeners to hear about that.

Beverly Canin: I'm very happy to do that. I was originally diagnosed with breast cancer in 2000. And for over 10 years, I was a very active advocate for breast cancer doing support for individuals of all ages and also peer review in the California Breast Cancer Research Program, the Department of Defense Breast Cancer Research Program. I worked in NCI, National Cancer Institute, committees and with the FDA. And in all those years of doing both personal support for breast cancer patients and committee work at national, state, and local levels, I was never made aware of special issues for older adults with cancer until I heard a session at the Annual Meeting of ASCO, the American Society of Clinical Oncology. I had been attending that Annual Meeting, but had never noticed that there was a session on cancer and aging. I was attending sessions that pertained to breast cancer only. And I was kind of blown away at what I heard and the fact that I had been an advocate for so long and didn't understand that there was such severe issues pertaining to cancer care for older adults. And it seemed to be based on 2 basic concepts or realities. In simplistic terms, it was that older adults were systematically ineligible for clinical trials, which meant that the results of clinical trials didn't necessarily apply to older adults. So treatments were being recommended that were based on a different population. And the other thing that struck me was that oncologists didn't have any training or minimum training in geriatrics, and geriatricians had little or no training in oncology. So that's what really caused me to see what I could do as an advocate to address these issues.

Dr. Magnuson: That's great. And you know those are some of the reasons why I am so passionate about geriatric oncology and really trying to move forward research about how to best care for older adults with cancer and ensure that older adults are included on clinical trials. I think delving into that piece a little bit more, Beverly, thinking about members of our audience that might be older adults who are talking with their oncologists about treatment options, knowing that some treatment options might be less studied in older adults or there may be less data. Do you have advice for your patients when they're talking with the oncologists about kind of how to talk about this and how to ask questions about how they might tolerate treatment or respond to treatment in that regard?

Beverly Canin: Well, of course, the first thing is to know what studies they're basing their recommendations on. And whether they included older adults in the results of the study. And unfortunately, all too often, we're going to find that the answer is going to be no. So, unfortunately, it really is incumbent upon patients to advocate for themselves and to do some research. And there are places, of course, here at Cancer.Net, and it is a very good resource. We also have the Cancer and Aging Research Group, which I have worked with now for over 10 years. And on their website, there is help and suggestions for older adults with cancer. The basic idea, I think, no matter who the patient is, is to have someone with you to make notes so that you can look back and study later. And to also understand that in most cases, there is time to make decisions. We tend to get very panicked about any kind of cancer and some, obviously, are much more aggressive, much more quickly than others. But for the most part, there is time to do a little bit of research and not make decisions hastily.

Dr. Magnuson: I think that is such important advice. Yeah, always bringing extra supports to help kind of absorb the information too is so key and really being able to have somebody to talk to about kind of that information in the context of your own personal goals and preferences is so important. And I agree also that patients and their support system can be such an advocate about aging-related issues or concerns that they might have that kind of interface with their cancer treatment plan. And I know ASCO and also the ACCC [Association of Community Cancer Centers] are really working hard to kind of disseminate information into academic and community oncology practices about caring for older adults with cancer. So I think we're all working hard to kind of spread that knowledge and patients can help us in that too.

Beverly Canin: It just occurred to me, it's really important also to understand that one of the primary issues and the thing that really needs to be explored with older adults with cancer is what are their goals? What's their hope for their life? Are they more interested in prolonging their life no matter what that means or in the quality of their life? And we have to remember with older adults or with anybody, we actually have 3 ages. We have a chronological age, we have a biological age, and we have a functional age. And those vary with every individual. I mean, the chronological age is fixed. That we know. But what that means for your biology or for your function is not relevant at all. And that is something that has to be explored and that patients need to be thinking about themselves because some patients are willing to tolerate toxicity for a short term in order to extend their life for varying periods of time. To me, a 2-month extension of my life might be very valuable because there may be something that I wanted. I may want to go to a wedding or see my granddaughter graduate or whatever it is. There may be a specific goal that I would like to live to see, but for someone else, that may not be important. They don't want to undergo that kind of toxicity because it may also impair your function or probably will impair the function.

Dr. Magnuson: I think that's so well said. Yes. And I think it's important for us to kind of comment on how doctors do have ways to talk with patients to assess their functional age and really kind of help understand where patients are coming at in relation to their chronological age. And how that might relate to kind of treatment and also supports that we might put in place to try to optimize that treatment experience. But your advice on the goals and values and talking about what your values are with your oncologist, I think, is so important. And really, no matter what your age is.

Beverly Canin: Right. And be honest. Be honest. Sometimes we are reluctant to discuss these things, and that can be a real impediment to the right choices for treatment. And it's not always easy to be honest with yourself. You have to really think of yourself, and your family, those who are also affected by what happens to you. And so it is complicated. It isn't easy. It takes determination. And it's good to be fearless as a patient and not be intimidated by your physicians, by your doctors.

Dr. Magnuson: Yeah, I heard a colleague once say that really, patients are the experts on their own bodies, right? And their own goals and preferences. So really, they are the experts there, right? And so kind of having that knowledge really makes patients such an important, that perspective is so important in the conversation. So making sure there's time and space to talk about that is really important.

Beverly Canin: I also appreciate the clinician who admits that they learn from their patients and that it's impossible to keep up with everything on their own and that they really need to learn from their patients so they appreciate what patients can bring to them.

Dr. Magnuson: Absolutely. Yeah. Beverly, we talk a lot about what we refer to as supportive care during treatment, meaning kind of aside from just the cancer treatment, all the extra things that we might put in place for patients to try to help them through their cancer treatment journey as well as survivorship journey. And sometimes, as a geriatric oncologist, I'm really using information about aging-related things. Maybe physical function or cognitive status. I wonder if just from a patient standpoint, you might comment on kind of why some of those aging-related aspects might be important in our cancer care and how doctors might create a supportive care strategy for patients.

Beverly Canin: I think we're beginning to learn how to do this. I think that’s an aspect that has been missing for a long time in intensive care, not just for older patients, but especially for older patients where there are all kinds of issues. And we have not mentioned specifically the geriatric assessment. But this is an important way of getting to these issues. And unfortunately, again, it's something that may be used in academic centers, but you're not finding that this is happening throughout the health care system. And it's very, very important that you use some kind of tool to assess these different ages that we refer to on each patient. And we know that there are several. We know one that is used quite frequently is the one that is found on the Cancer and Aging Research Group site, or CARG site, and which has been validated and used widely. But again, not widely enough, but it is a good way to get to these different issues that are not strictly medical.

Dr. Magnuson: I always use an example of if we have an older patient come in and we assess how their balance is and how quickly they're able to walk, that helps us estimate, are they at an increased risk of falling at home? Because we know a fall can really be a life-changing event. And starting on cancer treatment or chemotherapy might increase our risk for falls. So we really want to be aware of kind of all of those other aspects that might interplay with the cancer treatment so that we can try to head those off and mitigate them. So sometimes we might refer patients to physical therapy to try to improve their balance and strength as we're starting on that cancer treatment journey to try to lower that chance of falling. And I think the most important step is kind of assessing that, as you said, and figuring out where are those vulnerabilities and how can we intervene to try to help support patients in those spaces better?

Beverly Canin: The other thing patients can do is to connect with other patients who are going through what they're going through. And there don't seem to be specific support groups for cancer and aging or organizations that are focused on older adults with cancer. I'd like to see that happen so that we do have that resource available. But for the moment, I think, for the most part, it's a matter of through whatever organizations there are, if they have support groups, to join the support groups and try to meet other patients who are older adults.

Dr. Magnuson: Excellent. I would love to hear your thoughts on research, Beverly. You've been so active as a research advocate and we've worked together, collaborated in that space. But I'd love to hear your advice for patients, older patients who are considering clinical trials, or supportive care research studies. What recommendations you have to them about participating in research and why that might be important.

Beverly Canin: Oh, it's very important as I mentioned early on. One of the issues that is still prevalent is that the eligibility criteria for participation in clinical trials traditionally excluded older adults for reasons that didn't really make any sense. It was fear of comorbidities. Older adults are likely to have other illnesses as well. So they were feeling it might confound the results to have this mix, which didn't make any sense at all. And so now we don't have upper age limits on most clinical trials. But there is a need for patients to engage in clinical trials. And I think there are a lot of misconceptions about participation in clinical trials. And particularly, any of those that have to deal with medical treatment, that patients feel like, “I want to know what I'm getting. I don't want to go into a clinical trial that is having some people on a drug and some people are not on a drug, and I don't know which group I'll be in.” But what I think is behind that concern is that you might not be getting the best care that's available at the time. And that's not true because any clinical trials you have to be assured that the participants have at least existing standard of care. And so I think dispelling myths such as that.

The other thing, which you're bringing up, is that there are many, many, many trials that are so important about supportive care for older adults with cancer. And because these are the issues that fall by the wayside, but really, really influence how patients are going to respond to treatments. And so I think it's really, really important for older adults to ask their doctors about clinical trials, if they're eligible for clinical trials, and really consider participating in clinical trials. Many older adults will do so not for themselves, not expecting of results to be helpful to them, but for the future generations, to help future generations. And it's very, very important to think in that way, think in those terms. It's also important to find out, if you do start investigating any clinical trial, to find out what the costs might be to you. The ideal situation is that the patient will incur no cost at all, but we have found that that is not always true. And so it's really, really important to investigate that and understand if there is a risk of incurring any expense, which most patients can't do. And understandably.

Dr. Magnuson: Thanks, Beverly. We've talked a little bit about where patients might be able to go for more resources about cancer and aging information, but I'd love to highlight that. So if you have some just suggestions for patients where they might be able to access that information?

Beverly Canin: We don't have cancer support organizations the way we do for breast cancer or lung cancer and of the association that supports that. We don't have one that does that, but the best sources, I think ASCO here in Cancer.Net is providing information for patients. The Cancer and Aging Research Group website also has a page with information. The SIOG, the International Society of Geriatric Oncology, also has a page for patients. So it's really a matter of addressing the organizations that are focused on cancer and aging, for mostly focus for the research, for the scientists, but many of them also have pages that help patients. And ACCC I believe as well is a source for that.

Dr. Magnuson: Absolutely. Great advice. Lots of resources out there for patients.

Beverly Canin: Yeah, I mean, I wish it were easier than that. It's what we need to develop. We really do need to develop that. But we do have a group, we're engaging patients more and more in research, not as participants in the research but as partners with the researchers. This has been a very, very important development in advancing the issues and improving the research that is being done about cancer and aging.

Dr. Magnuson: Absolutely. As a researcher myself, who's worked with patient advocates and what I refer to as research collaborators, my partners on research, I can't emphasize that statement enough. It has been a critical part of my learning as a researcher and I think really strengthened all of our studies here at Rochester, for sure.

Beverly Canin: We have formed a research group called SCOREboard, Stakeholders For Care and Oncology and Research for our Elders, which is composed of older adults who are in treatment or were treated for cancer as older adults. And caregivers of such patients as well as advocates. And it has been very, very effective. We've been in existence now for over 10 years, about 12 years. And work very closely with the CARG researchers.

Dr. Magnuson: Well, thank you so much, Beverly, for chatting today about this. I hope there were some pearls of wisdom that our listeners were able to take away from you, and I always enjoy talking to you so much. I feel like I learn more every time, Beverly. So thank you for making the time today.

Beverly Canin: Well, I thank you for having me and giving me this opportunity to share my story.

ASCO: Thank you, Dr. Magnuson and Ms. Canin. Learn more about cancer care for adults over 65 at www.cancer.net/olderadults.

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