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In this podcast, Dr. Timothy Gilligan will discuss new research presented at the 2018 Cancer Survivorship Symposium: Advancing Care and Research, held February 16-17 in Orlando, Florida. This multidisciplinary meeting brings together primary care physicians, oncologists, patient advocates, and others to discuss ways to address cancer survivors’ unique concerns.

Dr. Gilligan is an Associate Professor and Medical Oncologist at the Cleveland Clinic Taussig Cancer Center. He is also a Cancer.Net Specialty Editor for Genitourinary Cancers. ASCO would like to thank Dr. Gilligan for discussing this research.

Dr. Gilligan: Hi. This is Dr. Timothy Gilligan. I'm a urological oncologist at the Cleveland Clinic Taussig Cancer Institute where I am an Associate Professor of Medicine and run the training program here in oncology, and I'm going to be the Chair of the Survivorship Symposium in 2019. But I'm here today to talk about the research that's going to be presented this year, at the 2018 Cancer Survivorship Symposium. And I wanted to highlight several of the studies that we're going to present from the podium at the symposium. These are the ones that we think are of most interest.

So, first off, cost of care is a big issue these days in healthcare for many different reasons, and one of the studies we're highlighting looked at cost of care and how it affects cancer survivors. This was done in Detroit. It was mixed between black and white cancer survivors pretty evenly: a little bit of a predominance of African Americans in the study. And 50%, half of the survivors, have experienced substantial material hardship. And when they looked further at quality of life, what they found was that people suffering from material hardship, this is associated with lower quality of life, lower physical and functional well-being. So the bottom line really was that financial hardship affects a large proportion of cancer survivors and negatively affects their quality of life and their physical, emotional, and functional well-being. I think this isn't going to be a surprise to people, but it's a reminder that it's bad enough having cancer and going through the treatment and dealing with all of that, is this additional huge burden of how much the care can cost. Medical bills, threat of bankruptcy for some people but then also lost income from work because people are unable to work. It's an important issue. So I was happy to see it highlighted in this way.

In relating, again, to cost, there was a study that came from Ontario, where they were looking at the issue of who takes care of cancer survivors. There's actually good data, in breast cancer, that patients do just as well following up when they're done with treatment with their primary care doctor as with an oncologist, that having an oncologist do the follow-up doesn't really result in any better outcomes. So they had a model for this in Ontario for breast cancer survivors, in particular, and trying to structure the transition from oncology-led care to primary care. And what they found was that patients who were in the program, who transitioned, had significantly lower health system costs compared to patients who were following up in oncology. They had fewer hospitalizations. They had fewer imaging studies done. And there's a strong trend right now in oncology to doing fewer follow-up imaging studies because almost every single time we've looked at it, we found no added value to getting more studies and that doing lots of CT scans, for example, in cancer survivors doesn't seem to result in any benefit to them. And it does result in costs and it results in radiation exposure, so. This is kind of tying in with the body of evidence that people don't need to see an oncologist for a follow-up and also can save money by following up with their primary care doctor.

One of the concerns with that, sometimes, is do primary care doctors know everything they need to know about cancer survivorship? And there are a lot of work going on around that. And there are actually a number of studies addressing that issue at the survivorship symposium this year. A number are being presented as posters, but one of them's going to be presented from the podium in which they did an intervention. They trained a physician to go out and train primary care physicians about cancer survivorship needs, so about late effects of cancer treatments and a variety of other issues. And what they documented was that this effort was successful at increasing knowledge and competence in that area. And probably more of that work needs to be done. If primary care doctors are going to be doing more of the follow-up work, it's going to be important to make sure they have access to the information they need.

So, similarly, staying on this theme for just 1 more study, 1 of the pieces of survivorship care has been survivorship care plans. The Institute of Medicine recommended, a number of years ago, that cancer patients should be provided with a survivorship care plan at the end of their treatment or near the end of their treatment. And in case you don't know what these are, survivorship care plans are supposed to include a summary of all the treatment that's been given, along with relevant health information and what the recommended follow-up care plan should be. This has been recommended, and institutions have been rolling it out, but there's actually very little evidence of what the benefit of doing this is. It seems logical that it's a good idea because then the patient has a record of what they went through and they can share it with other clinicians, but when there've been studies trying to look at this, it's been unclear that benefit accrues to the patient, at least in terms of their quality of life and well-being.

So there was a systematic review of all the research in this area that's been done, and what they found was that, when there were randomized trials of either doing survivorship care plans or not, they found no evidence of impact on physical, functional, or psychological well-being. Now, it's possible that there are other benefits that weren't looked at here. So, for me, as a physician, 1 benefit I would hope for is that the patient could get better medical care because the other physicians involved in the patient's care know what's going on. So this doesn't mean that we shouldn't do survivorship care plans, but what it really means is that we need to do a better job of measuring what the benefits, or potential benefits, are and then documenting whether or not those are real and trying to design survivorship care plans so they meet the goal as effectively as possible. But it was interesting that, at least for the patients' quality of life and well-being, they were not able to find an impact. So more research will be done in that area.

So then, I wanted to switch gears and talk about complications of care because that's a major theme at this meeting every year. And there are some interesting studies that addressed those issues. One addressed colorectal cancer survivors. This is a study of 1,700 patients with colorectal cancer who had survived at least 10 years after their diagnosis. They were looking at cardiovascular disease, and they found that 57%, so over half, were diagnosed with cardiovascular disease. This risk is more than two and a half times higher than the rate in the general population. And it was true across cardiovascular disease. And it was also true for the individual components of cardiovascular disease. So they looked at high blood pressure. They looked at heart disease. They looked at vascular disease outside the heart, and they looked at cerebrovascular disease. And all of these were higher in patients who had colorectal cancer. So this has some implications in terms of, this may be a patient population where it's going to be important to address risk factors that can be modified, so cholesterol level, and blood sugar, and blood pressure, and things like that. It's not clear whether it's the cancer or cancer treatment that's resulting in the increased risk of cardiovascular disease. It's possible that there are lifestyle factors that contribute to both. So people are doing something that causes both colon cancer and cardiovascular disease. But it can be helpful in terms of identifying what the surveillance needs are for this population. We not only need to worry about recurrence of the cancer, but we also need to pay attention to cardiovascular health.

There was another study that looked at cardiovascular disease in a completely different situation. This was in women with Hodgkin lymphoma. And women who were treated prior to menopause for Hodgkin lymphoma often experienced premature menopause. The treatment puts them into early menopause, in other words. And there's a lot of data showing that when women go into menopause naturally, their risk of cardiovascular disease goes up. And this is thought to be due to changes in hormone levels. So the hypothesis of the study was, well, if we take women who are in their 20s or 30s, and we give them treatment that results in them going into early menopause, does their risk of cardiovascular disease, therefore, go up? So the good news in this study was that the answer was no. There was no increase in cardiovascular disease related to early menopause in this patient population. In a sense, Hodgkin lymphoma survivors don't have to worry, if they're in early menopause, that this is going to be a negative health outcome from that.

Another issue that was looked at in terms of complications was suicide. This was focusing on head and neck cancer patients. The study was based on data from the National Cancer Database in the US. It's called SEER, S-E-E-R. And it doesn't capture every single case of cancer in the US, but it comes closer than any other database. So it's really a national representation of what's going on with cancer patients in the country, and it's used for a lot of research. For this study, they looked at people with a lot of different kinds of cancer, but they were focusing on head and neck cancer patients in comparison to other cancers. And they were looking at suicide rates. Head and neck cancer patients have specific quality-of-life issues. It's a very brutal treatment to go through, and it can result in significant compromise in your quality of life because your mouth and throat are affected. So talking, swallowing, breathing, all these things can be affected and often don't go back to normal. And often they're ongoing issues. What they found was that the suicide rate in this population was 80% higher than other cancer survivors. So it wasn't a cancer issue. It was really specific to head and neck cancer. The only group that was as high, and in fact was a little bit higher, were male patients with pancreatic cancer. So this is a warning about the psychological distress that head and neck cancer patients experience and male patients with pancreatic cancer. It's interesting that there's a gender difference because women with pancreatic cancer did not have an increased risk. But it's a warning sign that these patients are at risk of emotional distress, and there's probably more we could be doing because often in oncology we focus primarily on physical health, and there's a risk that we're neglecting emotional needs of our patients and of survivors.

And then, finally, 1 of the obvious concerns for cancer patients and survivors and an issue that can obviously affect their quality of life, is the fear that the cancer will return. So this last study looked at over 1,000 cancer survivors and asked them about fear of recurrence with a formal survey. And what's interesting is they found that only 11% reported a high fear of recurrence. 34% reported no fear of recurrence. And the remaining 54% reported a low fear of recurrence. So this is interesting to me because I'll have patients who say they're not really worried about it. And I'll wonder, are they telling me the truth? Is this real? I would think they'd be worried about it. And this study, in some ways, was reassuring that cancer survivors are doing a better job than maybe us oncologists worry, about getting on with their lives and not having this shadow hang over them excessively. Again, most had at least some fear of recurrence. So I'm not saying that it's not there, but it wasn't as bad as I think people were thinking it might be, at least in terms of this data set.

What was interesting was that, if they looked at symptoms of depression and psychological distress, there was no association with fear of recurrence. But when they looked at other metrics of mental health and emotional well-being, there was an association. Now, it's not clear what the direction of this association is. It may be that if people are really worried about fear of recurrence, that has an impact on their emotional health. It may be that if people are having trouble with their emotional health, they're more apt to worry about fear of recurrence. Or it could be both. But the implication of the study, for me, is that there is a subset of cancer survivors that suffers from a very high fear of recurrence and potentially could benefit from more help in that regard. Fortunately, most patients seem to be doing reasonably well with this issue. We need more research to identify which patients would benefit from help and also determine what is helpful to them.

So that, for me, was really the highlights of what came out of this. A variety of different issues. Cost of care. How do we get primary care doctors up to speed to help cancer survivors? What is helpful to cancer survivors? And what are we learning about the complications of cancer and cancer treatment that we need to pay close attention to in the coming years? I hope you found this worthwhile, and I look forward to seeing any of you who are at the symposium this year. This has been Timothy Gilligan. Thank you.

ASCO: Thank you, Dr. Gilligan. Find additional resources for life after cancer at www.cancer.net/survivorship. And for more expert interviews and stories from people living with cancer, visit the Cancer.Net Blog at www.cancer.net/blog.

Cancer.Net is supported by the Conquer Cancer Foundation of ASCO, which is working to create a world free from the fear of cancer by funding breakthrough research, sharing knowledge with physicians and patients worldwide, and supporting initiatives to ensure that all people have access to high-quality cancer care. Thank you for listening to this Cancer.Net Podcast.

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