The list of symptoms associated with cancers of all kinds is of course extraordinarily long. Particularly, among breast cancer survivors, these can include fatigue, hot flashes, and cognitive changes related to chemotherapy, nausea and vomiting, and sexual health, just to name a few. Of those, while sexual health and functioning have been reported in over 50 percent of women diagnosed with breast or gynecologic cancer. In most cases, these issues are not a part of standard cancer care which is where the research comes in. How can various physical symptoms, fatigue, body image, and partner issues predict overall sexual health among cancer survivors? What interventions, from clinical, to medications, to behavioral, show the most promise?
Dr. Debra Barton is the Mary Lou Willard French professor of nursing at the University of Michigan School of Nursing. She has spent her career looking at symptom management from multiple perspectives and finding ways to use more than one intervention to reduce symptoms with minimal to no side-effects. She’s also been a BCRF grantee since 2008.
Chris Riback: Doctor Barton, thanks for joining me. This range of symptoms for people undergoing cancer treatments, or even survivors, is so unbelievably long for many folks, both on the science and research side, but also on the patient side and just among folks who are dealing with the disease. I’m sure it can become a bit overwhelming. You focus on oncology symptom management. As you think about that range of symptoms and as you thought about it over your career, how do you begin framing that and considering where to act?
Dr. Barton: That’s a very good, comprehensive question, and I think there are as many people who are interested in symptom management and survivorship care, you would probably get different answers from every single person because there are lots of places one could start. For me, the decision has been based on where is the literature, the evidence, in terms of what the most common distressing symptoms are, and then coupled with that is, where is there the biggest gap in terms of things to do? As well as areas that are not usually integrated into cancer care. For me, that meant fatigue, in particularly, and sexual health as you alluded to in the introduction, fatigue is one of those symptoms that actually crosses all types of cancer and treatment, and can actually lay out first data in breast cancer survivors that fatigue can exist long after treatment is over. The question becomes, why is that? Why doesn’t the body go back to kind of its pre-diagnosis normal?
That’s part of what I’m trying to understand with fatigue research. Then the other area is sexual health and fatigue certainly contributes to that if you’re anybody who had a child can remember what that sleep-deprived time in their life was and how little interest they had in sexuality, for example. It’s not too dissimilar in cancer survivors going through all the stress of treatment and having sleep disturbed and feeling a lot of different symptoms. You don’t exactly feel like you’re best self and so, helping women, in particular, which is what my research is, who my research is with. How to get back as much of their normal as possible. To feel like they’re whole, well, integrated self is really what I want to help people do.
We figure out what things help with that, then the next step, of course, is to do the kind of research where we can identify, very easily, adaptive processes to actually put that as part of care, so that it’s not a burden, so that it’s not a whole bunch of extra time. So that people, providers, can be very well-versed on how to help women address those very important issues from the very beginning, throughout their entire treatment course, and afterwards, so that they can move through the cancer trajectory very smoothly, back into their full lives and have their full quality of life.
Chris Riback: This question of quality of life, I’ve talked to various scientists and researchers, obviously, that is such a key, and personal part of cancer care and the definition of quality of life obviously, can range on some level. On the one hand, obviously, we know there are measurements of quality of life that get taken, but at the same time, it can often come down to just a personal sense. I’m struck by the fact that as you approach that, and the sexual health portion and the sense of somebody feeling as their best selves, which I can only imagine is incredibly difficult to do, to say the least.
It sounds like you actually start working with women during the treatment, which that surprises me, or surprised me because I would think that during the treatment, anyone would feel much, much less than their best selves, so is that part of the treatment? Is that about a future mindset? Is that about getting folks thinking, and envisioning life, going on in the future, not getting caught up in the current status, or stage that they’re at? Or are there actually actionable things that folks can do, the women can do? Or desire to do around treatment even while they’re undergoing active cancer treatments?
Dr. Barton: That’s a very important point, and it’s something that is very common. You’re surprised at starting during treatment. A lot of people think that. A lot of people think that during treatment, that’s when people are focused on getting their cancer treatment, and fighting their disease, and they’re not interested in other things. Yes, the symptoms that are tightly linked to chemotherapy, like nausea and vomiting, yes, we’re going to address, but all the other things can wait, and they’re not as important at that point. What I believe, and what the actual data has shown is that starting earlier to set the context and give people preparatory information so that they know what kinds of things people have experienced, what’s possible, what they might experience, how they might feel and how that might change over time, is really important.
People kind of assume, women can assume, “Oh man, I feel like this. I’ll bet I’m the only one in the whole world that’s ever felt this way. I wonder if I’m taking this harder than everybody else, or if this is something unusual?” Sometimes, they never ask those questions, so I think it’s really important to let women know what the range of potential symptoms and changes might be and to remind them that it is possible to try and keep some kind of normalcy throughout their treatment so that it’s not so much of a change to get back to their normal life after treatment.
Let me give you a very concrete example. We’re working with women on self-image and we are doing this relaxation imagery, hypnotic intervention, to help women relax and see themselves as whole and well, and strong. As part of that intervention, we have women choose a behavior. This is at the end of the intervention, choose a behavior that sort of expresses who they are and to integrate that into their lives. We are doing this study with women who have completed treatment at least six to 12 months previously. These are people who are done this treatment. To my surprise, the whole study is to improve sexual health, so I sort of assume that women were going to choose romantic getaway weekends to plan, or buying a new outfit or something like that, but they’re not.
What they are choosing to do, for the most part, is reconnecting with a hobby that they did before cancer treatment that they had totally kind of let go of, forgot about. Many of those hobbies are related to arts and crafts. Like, “You know what? I used to paint. I haven’t painted for two years. I’m going to get my easels out and paint again.” Lots of examples similar to that, and that has been such an aha moment for me, that if we could, up-front, tell them not to forget about those things that are part of who they are, and how they express themselves. They may not be able to do it to the extent because there are a lot of things you have to fit in during treatment. I’m not naïve about that, but even if they could save a little piece of time for themselves to do something that expresses who they are, I believe that it will help the coping and the transition throughout the treatment.
Chris Riback: It’s almost, and I’m sure it is, a combination. What I’m hearing, is really this combination of what I can only assume is a range of sciences. The medical component, obviously, and a physiological, and physical aspect, but so much of what you’re discussing, to me as a layperson, is the psychological, the emotional, and that phrase that you used earlier in the conversation of being one’s best self.
It’s a fascinating insight that one of the things, you hear this. You hear people who are going through, or have gone through cancer, and you hear the stories of how they learned about themselves. You hear about that journey, and it’s sounding like some of the work that you’re doing, if one can reconnect, maybe with a lost trade, or a lost passion, that a woman had, or a person had, once upon a time. That’s a fascinating, and again, to me, an expected part of cancer treatment and a very positive one. Is that what has drawn you to this aspect of surprises and learnings? Also, that’s a really, very positive aspect of what can obviously, often be such a challenging and difficult time.
Dr. Barton: Yes, I think that you summarized that very well. I think one of the things that I am very passionate about, I believe very strongly in the power of the mind. There is a connection. I remember a long time ago, listening to somebody talk about just the fact that when you take a very deep breath in, hold it for a couple of seconds and let it out, it changes all of your brain chemistry.
We have a huge resource in our brain, in our mind. What I explain to patients is that we don’t wake up in the morning saying, “You know, I’m going to be just really crabby today. I’m going to be in just a down mood.” We don’t make that decision. Consciously, something happens in our environment that triggers some negative cognitions that we have had in experience in the past, that kind of sets our mood off. Then we have it. If we could realize what those were and then change them, we could actually change our days and so, one of the things that I feel very strongly about is that we need to do research to show what these behavioral and cognitive interventions do, physiologically.
I, personally, would pause it that they are as strong, or stronger, than any drug we could take and that we have to do the research to show what physiology we impact when we do certain things.
Chris Riback: It’s a very compelling point. I mean, who wakes up and says: “You know what? I’m going to be my worst self today. I’m not going to go for my best.” It’s a compelling point, and it connects me as well, to something you said earlier in this conversation as well, that struck me, which is that you communicate. I forget your exact phrasing, but your point was that you communicate not only with patients, but also with providers. What is that audience like? How receptive is the provider audience, do you find, to your messages, to your research? Again, this is probably an outdated view, but I can imagine doctors, and scientists, and folks who may be very steeped in the medical, or the physical, or the physiological component, is connecting your message with them challenging? Or do you find great reception to it, and in fact, they are open and grateful for the insights? Maybe most of life, you find a mix?
Dr. Barton: Yes, I think it’s definitely a mix, but I think for the most part, people are open. I do feel like we have a responsibility to do the research to actually show that science and not just say, “You know, this is what I believe, so take my word for it.” I think that the other side of that is that I think providers are also very open to trying to help survivors reconnect and have that psychosocial adjustment. I think the challenge becomes just like in many areas, there’s just not enough hours in the day, there’s not enough hours in the clinic day in particular.
I don’t know. There is a lot of research being done on survivorship clinics and what’s the best way to deliver cancer care and what’s needed? I think the challenge is balancing the resources, and the costs, with what is needed. I think we have a long way to go before we really figure out the most efficient way to do that. I think that the providers are very open and interested in wanting that research to be done, and wanting to understand.
What does my clinic need to look like in order to meet all of the needs of the patients? Not only their disease treatment needs, but their psychosocial needs as well? I think people only don’t do it because they don’t know what to do. We have to figure out what works, and then we have to figure out how to integrate that into the clinic. Unfortunately, that’s not a quick, simple thing, and that’s what I get frustrated with is how long a process takes do the research to figure it out and then how do you translate that into the clinic where it can be broadly across all clinics and across the entire country, and even world. How do you make this accessible to everybody? That’s the challenge, but there’s quite a few people working on that challenge, and I believe that we’ll get there.
Chris Riback: A certain amount of in-patients, I’m sure is a requirement to drive good research and get the results, and then take those results and then put them into actions. On the research front, describe for me, if you could, what is your current research? How is it working? What stage are you at? What do you hope to gain from it?
Dr. Barton: Right now, the research that I’m doing with the Breast Cancer Research Foundation is building a four-component intervention for sexual health. Sexual health is not a simple thing that is caused by one thing. That’s true for all symptoms. Symptoms are complex, they have multiple parts to them, and they’re not going to be either prevented, or fully treated, with just doing one, tiny little thing. Sort of like tossing a bucket of water on a fire. It just doesn’t work. You have to have a very strategic, comprehensive approach.
That’s what I’m doing with sexual health. The research has shown that there are four main predictors of sexual health, partner, issues, self-image, desire, which I think in cancer survivors is part of energy, motivation, the fatigue component and then vaginal symptom issues. I’m developing an intervention for each of those components, then I’m going to put that together into a protocol that can be individualized because not all women are going to have all of the issues in all of those areas. It can be things that women tend to say, “This is the most important thing to me right now. In this area, I want to tackle this. Then I’ll tackle this second thing.”
A very manualized, easy thing that nurses, social workers, and any clinic could help women do pretty much by themselves, or with some resources and tools available. That’s what I’m right in the middle of right now.
Chris Riback: At what stage are you at in the research?
Dr. Barton: It’s in different stages for the different components. The vaginal symptoms, there’s been a large study already done, and ready to be published, so we’re submitting that. That could actually be already the information that we learned from that study could already be used in practice. For the self-image study, we’re sort of in the middle of fully testing the intervention and we should be done with that in the next year. The sexual desire energy study is just being written and should be starting within probably the next six to eight months. Then the partner intervention is yet to be developed.
Chris Riback: Just quickly, Doctor Barton, as you approached research throughout the years, obviously, there are a range of organizations. Many groups all doing great, and terrific, work in all areas of cancer. It’s not limited obviously, to just one area. How does BCRF work? What does it do, specifically, in terms of your approach to research and what you see its approach to research more generally? Anything that makes it different or unique from your point of view?
Dr. Barton: I think that the Breast Cancer Research Foundation is very unique and facilitory in terms of research. I think there’s a couple of reasons for that. One is, they have a group of scientific advisors who really know breast cancer backwards and forwards, and they know what the gaps are, they know what the science is. You don’t have to re-explain that to them. They get it and they get what’s important. Because of that, you can really push the envelope in terms of, I think, innovation in different ways to approach problems and get funding to do that.
I always say that the Breast Cancer Research Foundation allows one to do research that is a bit unconventional. Things that people wouldn’t necessarily, in the traditional funding groups, either understand or think what works. Yet, it does. I think sometimes, to really move science, we just can’t keep doing things the same old way. We really have to think a bit differently and try different approaches. I think Breast Cancer Research Foundation allows the scientists to do that.
“I think sometimes, to really move science, we just can’t keep doing things the same old way. We really have to think a bit differently and try different approaches. I think Breast Cancer Research Foundation allows the scientists to do that.”- Dr. Debra Barton, BCRF grantee
Chris Riback: Got it. There’s completing of the various researches and you’re going to set up protocols for each one of them, or interventions for each one of the four aspects, but I guess somehow, bringing them all together to the extent that it’s reasonable or useful, I guess. A comprehensive package, I understand you indicated already that not everyone has every symptom, so they don’t necessarily have to go together. It’s a wide range, and four different aspects. Just to close out, I was interested as well, you work out of the University of Michigan School of Nursing, and the school of nursing as a platform, or any school of nursing as a platform for research, it’s not what I hear about every day. Obviously, surely only exposes my naivety around this areas. Just describe for me a school of nursing as a platform for research and how that informs the type of work that you might do, if it does. This is an area that just kind of truck my curiosity.
Dr. Barton: The School of Nursing at the University of Michigan and of the reasons why I’m there is because there is a very tight connection with the University of Michigan Health System. As part of that health system is the Cancer Center. I do my research out of the Cancer Center in collaboration with Cancer Center physicians at the University of Michigan. As well as a lot of my research I do in the large, cooperative group system in the United States that is part of the National Cancer Institute, and I don’t know how much you have heard about that, but there are different research bases. They’re funded.
I actually do a lot of research through there, and that’s kind of a great infrastructure to do research through because it is the health care delivery part. It’s where community cancer centers where most patients are treated. If community cancer centers can do the intervention, can implement the study, then they can implement the intervention and integrate that into their care.
It’s a great venue to do research when you’ve got an established intervention that you know could be helpful and how do we then get this to the patient? I love that, but the initial part of really testing whether this intervention has any promise whatsoever, is done through the cancer center. I shouldn’t say “most”, a lot of schools of nursing will have pockets of faculty who have expertise in a given area and oncology is a very popular area for nurses or scientists. It’s a very popular area for students who are looking for PhDs. We have our new PhD students tell us when they apply, “What do you think you want to do your research in? What kind of faculty mentor do you want?” I would say over 50% want oncology, sensor management. It’s a very, I think, attractive area because there is so much to do and it’s so gratifying to really be able to find solutions to some of these issues.
Chris Riback: It has to be, and particularly in the areas where you’re working, the data show can affect high percentage of women who they’re diagnosed with breast or gynecological cancer in most cases, for this not to be part of the standard cancer care. Just a fascinating opportunity it would seem to me, and it goes back to what you said at the beginning for areas where things are occurring, there are symptoms, but there may be a gap between that and the amount of care that’s actively being given. Doctor Debra Barton is the Mary Lou Willard French professor of nursing at the University of Michigan School of Nursing. She’s also been a BCRF grantee since 2008. Doctor Barton, thank you so much for your time. I’m Chris Riback, this is BCRF Conversations.
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