This conversation, part of BCRF’s Investing Breast Cancer podcast series, is an outstanding and thoughtful conversation on stress, breast cancer, and the science of survivorship.
How can women undergoing breast cancer treatments manage stress? Perhaps more significantly, are there scientifically researched and proven approaches that not only help increase their health and wellbeing – but even improve the recovery process and results?
This is the important work that Dr. Annette Stanton does.
Dr. Stanton is Professor of Psychology and Psychiatry/Biobehavioral Sciences at the University of California, Los Angeles, senior research scientist at the UCLA Cousins Center for Psychoneuroimmunology, and a member of the Center for Cancer Prevention and Control Research in the Jonsson Comprehensive Cancer Center.
Chris Riback: Dr. Stanton, thanks for joining me.
Dr. Annette Stanton: Thank you.
Chris Riback: In so much of medical conversation and news, and not just with breast cancer, but even more generally, we focus on the scientific breakthroughs, the new treatments or the medications or the procedures. Obviously it’s incredible and wonderful and we’re grateful, but in reading about your work and your approach, focusing just on that hard … I don’t mean to call that hard science. You’re dealing in hard science as well, but just focusing just on the new medicines and the new breakthrough, that may not be enough in seeking to maximize recovery. Is that right? Am I interpreting that correctly?
Dr. Annette Stanton: Yes, I think that’s right mostly. I think it’s right in that anyone who knows what it’s like to go through breast cancer themselves or in a loved one knows that the experience and recovery are really far more than the mechanics of diagnosis and treatment. It’s the psychological experience of being diagnosed with a serious disease that could threaten your life and your goals in life. It’s going through treatments that can rob you of your energy and affect your ability to think.
It’s the effects on the people who love you and how you interact with them. It’s really also how to move on in your life once your primary treatments have ended. So, all of those are important parts of the experience that really deserve attention too, and that’s where the science of survivorship comes in.
The attention in the media and the scientific community on effective prevention and treatment and cure of breast cancer and other diseases is really well-placed. I mean, we all want a solution to breast cancer. The ability to live well after diagnosis also deserves a lot of attention.
Chris Riback: The phrase, “The science of survivorship,” how does that get integrated? How do you find does that get integrated? I mean, I read about what you’re doing and I read your materials and I think about it and I’m like, “Wow, this is exactly what I would think I would want or what anyone would want,” because what you just described about the stress and the emotional and psychological impact is extraordinary. We all would be incredibly sympathetic towards that.
How does the science and the tactics and the approaches around what you are talking about, how does that get implemented? Is that through the caring physicians themselves? Is it through other programs? How does that type of awareness and the science of survivorship, how does that become part of the recovery process?
Dr. Annette Stanton: Well, I think there are two questions there maybe. There’s how the-
Chris Riback: There actually might have been about 10 questions in there, but you’ll go through them, I’m sure.
Dr. Annette Stanton: Let me choose two of them.
Chris Riback: Choose the best two.
Dr. Annette Stanton: I think the science of survivorship gets integrated through really team science. I have multiple collaborators. I have mostly oncologist collaborators because most of the science that I do gets conducted through the breast cancer clinic or the oncology clinic, and so I’m collaborating with the oncologists who work in that way.
The application of the science of survivorship also can get translated through the clinic, and so when we find something that we think is really important and can help improve quality of life and health, then we work to translate that science into approaches that women can use in their daily lives. That may be translated through the clinic. It may be translated through the internet, and so really both the science and its translation into intervening, it takes a team. It takes the acknowledgement I think on the part of the team that survivorship is really important.
Chris Riback: You know this theme that you’re talking about right now has been coming up in a number of conversations, the translational aspect of science in both the research component, but also then with the learnings and the applying that and the approaches.
So, I appreciate your having broken down my question into two. Let me attempt to break your response down into two, as well. Let’s break it out into the science one, and then two, I really want to get into the approaches and particularly, the work that you’ve done around identifying, my word would be virtual cohorts or support groups, but I know some of the online work that you’ve looked into, as well.
Talk to me about the science. You’re working on multiple studies, or certainly have worked on multiple studies, that seek to identify the factors that can improve the outcomes, the quality of life after a breast cancer diagnosis. What do those studies look like? How do they work? If you want to pick either the most recent one or one of the ones that stand out in the past, just talk to me about how those studies work, please.
Dr. Annette Stanton: Sure. We use I would say three basic methods to try to understand factors that predict quality of life and health for people with breast cancer. The first is really focused on understanding whatever subject we’re studying. There, we’re usually using longitudinal studies. So, those are studies in which we recruit women typically from the clinic, but sometimes through the media and other outlets, and we follow them over time to try to understand what factors help and hinder them as they go through particular phases of the cancer trajectory.
So, that might be immediately after diagnosis and through treatment. It might be that post-treatment phase, what we call the reentry phase when you’re finished with maybe your primary treatments, chemotherapy, surgery, radiation. It might be understanding the experience of women with metastatic disease. So, part of what we do is following women across time to understand what factors help and hinder them through the course of whatever phase we’re studying.
A second approach is to bring women, or sometimes these are studies that are experimental studies that are not specifically with women with cancer, but we’re looking at basic processes. So, we try to bring women into the lab and others and conduct experiments to understand the processes.
For example, one of our findings is that women who actively accept their diagnosis, actively accept that this is what they have and this is what they need to deal with, those women do better over time with regard to having fewer depressive symptoms and other kinds of outcomes than women who really try to push the whole experience out of their heads and out of their hearts, so women who avoid.
We also find that women who actively express themselves in terms of their emotions do better in terms of those outcomes. So, we bring, for example, women into the lab and have them write about or vividly describe their experience in particular ways, so we might have them write about their deepest thoughts and feelings about their experience, versus, for example, just the facts about their breast cancer experience. That’s in an experimental way, we use basically random assignment to understand then the outcomes of those different ways of approaching the experience.
Then, third, out on the community, we conduct randomized controlled trials to translate our findings into approaches for intervening that might help women, them for example be able to approach their experience actively through acceptance and through emotional expression and through other helpful methods of coping. So, we basically go from sort of the field to the lab and back again trying to first understand the experience, and then translate the findings. Does that makes sense?
Chris Riback: It makes total sense. What kind of blew me away is I guess the bottom line point is, the studies show that your trials and research have shown that those tactics translate, sorry to use your word, into actual results. You see positive results from women or survivors or people undergoing treatment who actively take those emotional psychological measures and approaches and tactics as opposed to, unfortunately, women or recovery individuals who don’t have that opportunity, for whom that’s not part of their process. Is that right? There’s just a tangible positive result out of these tactics.
Dr. Annette Stanton: Yes, I do think it translates into concrete results. One prominent example that I can think about that was supported in part in BCRF we called Project Connect Online. I got this idea really from women with breast cancer.
One woman who was in one of my research studies told me about the time when she was first diagnosed with breast cancer and her sister, who was an executive in a tech company, created a website for her to basically communicate on how she was doing through her diagnosis and cancer treatment to her loved ones. Many of them were far away. They were across the country. So, this kept them [inaudible 00:14:36] of how she was doing. She posted a photograph with her with no hair because she had gone through a chemotherapy that made her lose her hair. She posted photos of her doing activities that she loved, despite what she was going through.
Then, when the tech executive also got breast cancer, her sister, the first diagnosed, was well enough that she could create a website for her. So, they ended up creating websites for each other. The woman who was in my research told me how useful that was in being able to communicate with their network in a really personal way that really relieved them of the need when they were going through treatment and really tired and had sort of minimal resources that they really wanted to use on particular things, that they didn’t have to tell the story repeatedly.
It kept their network up on what they were doing and how they were doing. It told their network what they could use at particular times. For example, whether it was something concrete, like one woman’s son being brought to his guitar lessons, or, “I can really use your cards and prayers this week.”
So anyway, that conversation with that woman ended up launching Project Connect Online, because even at that time, there were some sources, one is called Caring Bridge, where people with cancer or other diseases can post to a network, the people who love them, their friends, their family, coworkers, how they’re doing with whatever disease they’re going through. So, there were some sources out there and I knew that people were communicating online, but as far as I knew, no one had tested the effects of those sources using those sources on how women did.
So far we’ve done two trials of Project Connect Online. I work with a web developer, and basically, we randomly assigned, like the flip of a coin, randomly assigned women in this first trial and this was with any woman diagnosed with breast cancer, regardless of stage, time since diagnosis, et cetera, to either have their usual care, and we provided them with some resources for contact if they needed psychological or wanted psychological resources, that sort of thing, or assigned them to Project Connect Online, which in a three hour workshop, at the end of the three hour workshop, basically they had created their own personal website to communicate with whomever they chose.
They could be very selective. They could keep it to their immediate family or they could keep it to their friends, et cetera. They had created their own personal website to communicate with others about their breast cancer experience. Lots of people would call these blogs. Really, what they became is sites to write about their experience and to communicate with their loved ones.
So, we tested Project Connect Online first against standard care in an experiment and found that the women who had engaged in Project Connect Online and who had created websites and shared them with selected others, those women were less likely to have significant depressive symptoms. They had a decline in loneliness. They had an increase in the social support they perceived from friends. They had an increase in their appreciation of life, the value they felt they got from life, and some other outcomes. So, those are the kinds of tangible results. Oh, and they got an increase in confidence for how they were coping with cancer, and so those were the kind of tangible results we got from the women.
Then, in that first study, we also asked people who visited their websites, so their loved ones, friends, et cetera. First, we found that it was mostly friends who visited their websites and we found that the friends also reported that they got a lot of benefit from understanding what the women were going through, from keeping up on their treatment, those sorts of things.
[People] also reported that they were likely to do what the woman had asked for on her website, bring a meal or write her a card, those kinds of things. That’s one example of some of the kinds of benefits that we think are important as women go through the cancer experience.
Chris Riback: It’s such an incredible example. I mean first of all, for the women themselves, noninvasive, no after effects, no side effects, no negative side effects. I guess a lot of positive after effects, but you know what I’m saying, no negative side effects, and then that network effect that you just mentioned, which I would imagine … I was trying to think about this in terms of … And I was kind of thinking about a question for you, but it felt a little bit inappropriate. I was going to ask you about, well, gosh, your work, how do you think about … Look, when someone goes through breast cancer, they’re not going through it alone. Well, one hopes they are not going through it alone.
Dr. Annette Stanton: Exactly.
Chris Riback: There is, in theory, and usually family members, loved ones, friends, and they feel emotionally about the situation obviously, as well. So, you just described, there’s a positive network effect as well. It’s incredibly powerful. You said you had done two studies on that. I found I think one of them, the one that you published in 2013. I don’t know if that was the first of the two that you published, but that was the-
Dr. Annette Stanton: That would’ve been the first, yes.
Chris Riback: Okay, great. That’s what I thought. You’re based at UCLA, so you’re really in tune with how Hollywood creates titles, and I think that you just came up with a real Hollywood title here. Project Connect Online: Randomized Trial of an Internet-Based Program to Chronicle the Cancer Experience and Facilitate Communication. So, that may not be Spielberg’s title.
Dr. Annette Stanton: No.
Chris Riback: No, but you’re in academics, so it’s a great title for what you do for a living. What was the reaction to the study? I mean, you’re in ground and territory that I could imagine a real mixed reaction to. I could imagine some in your world saying, “Holy cow, that is so incredibly positive to find noninvasive, non-intrusive, low cost positive ways to impact people’s lives,” and perhaps, and I’m wondering this, are there others who said, “Come on, Stanton. That’s hocus pocus”? What was the reaction your study?
Dr. Annette Stanton: Well, let me first comment on some of the reactions of the people in the study.
Chris Riback: Please. Those are really the ones that matter, obviously.
Dr. Annette Stanton: You mentioned the network effect, so let me comment a little bit on that.
Chris Riback: Please.
Dr. Annette Stanton: One of the most meaningful notes I’ve ever had about my research came from a daughter of one of the women in the study. She wrote that her mom found the website an incredible lifeline for her because unfortunately, her mom had metastatic cancer. It was very advanced. When she participated in the study, she came to the workshop. She was mobile. She was able to get out and around.
As her health declined over that next six months, and we measured outcomes primarily at six months, her health declined over that six months. So, her daughter said that Project Connect was her lifeline to other people. She couldn’t get out and around, but that she could communicate through her website and others could communicate to her. She could tell selected people when she was up for a visit, and she could tell people when she wasn’t, so the daughter said, “Thank goodness for this.” To have that kind of meaningful impact on a woman’s life toward the end of her life and her daughter, that’s part of what keeps me going every day.
Chris Riback: I would imagine so.
Dr. Annette Stanton: Okay, so let’s talk about the broader scientific reaction. Well, I have to tell you that I didn’t get any negative reactions from the science community. That’s partly because, I think … I think there a couple reasons for that. One, I did use an experimental method. I randomly assigned women to either this particular condition or in this case, a no treatment control, a standard care control.
Now, that still has some limitations in methodology, but at the same time, the findings were so consistent from Project Connect Online that I didn’t have a lot of skepticism about that, about the findings. Now, you do have to continue to replicate these kinds of studies and to compare them to other kinds of interventions. So, I think that that’s really important to do regardless. We all would know that.
I think the second thing that probably helped is that I didn’t say that Project Connect Online does anything to cure cancer. We were interested in specific outcomes, depressive symptoms, loneliness, life appreciation, feeling confident in one’s ability to cope. I think having those specific outcomes and measuring them in validated, scientifically accepted ways made the results more convincing. I didn’t attempt to say, “This is the next cure for cancer,” because I don’t believe that.
That said, some of our writing studies … Now, I’m not talking about Project Connect Online, but a different type of writing study that I mentioned before, having women write about their deepest thoughts and feelings about their cancer experience versus the positive aspects of their cancer experience versus just the facts of their cancer experience, one of the outcomes we’ve used in that study, for example, is over the next few months, whether women have appointments with their oncologists that aren’t for standard scheduled reasons. So, that means that they’ve had some kind of problem so that they make an appointment with their oncologist because they’re worried about something, right? They have a symptom that they’re worried about.
What we found is that writing about one’s deepest thoughts and feelings compared to just writing about the facts of the cancer, the women who wrote about their deepest thoughts and feelings had fewer medical appointments for cancer-related problems with their oncologists over the next several months.
Again, that isn’t about curing cancer, but it is about the kinds of potential physical health benefits and the ability to do well both psychologically and potentially physically if you attend to some of the other aspects of survivorship.
Chris Riback: If I could, with apologies, I know I’m supposed to be asking you about the application of your work to breast cancer, but it’s occurring to me and I imagine the folks listening, is what you’re describing able to be extrapolated? I don’t want to hold you to a proven scientific … You may not have researched this, so this may be asking you your hypothesis, can this be applied to other aspects of one’s life?
You study stress. You study the emotional responses to stress in emotional and actionable ways to mitigate stress and improve one’s quality of life, and you’ve just described how you apply that to situations around breast cancer. Just briefly, to go outside of breast cancer, can one extrapolate some of these lessons to other stressful times in one’s life, or is that dangerous to do because you haven’t studied that necessarily?
Dr. Annette Stanton: I haven’t studied that very much, although we do some basic writing experiments with more than breast cancer patients, but one of the reasons I started these writing studies was because I was really interested in the effects of emotional expression versus emotional suppressing, suppressing emotions, not expressing them.
I came upon a line of research. It was started by Dr. James Pennebaker, and he had demonstrated that writing, what he called expressive disclosure, expressive writing, in basic experiments with people going through stressors, and this could be undergraduate college students and then other samples, had these effects on both psychological and physical health.
In part, I started these experiments because I didn’t believe his findings. I was skeptical. How could this kind of experience, this kind of getting people to express deepest thoughts and feelings in an experimental setting, have both psychological and physical health benefits?
So, we started a line of studies and one of them, I was already working in cancer, and so my first one other than a young adult population was in women with breast cancer. I was really surprised to find that we found similar findings. So, actually, in the larger literature, these kinds of approaches have been used in scores of studies and reviews, systematic reviews, what’s called meta analysis, which is a way of aggregating a bunch of studies’ findings together quantitatively, do show benefits on both psychological and physical health parameters.
Now, those findings are consistent. They’re reliable, meaning consistent, and they do tend to hold up. It’s not a panacea. It doesn’t take away all problems. It’s not any kind of miracle, but it is one tool maybe in an armamentarium of resources that can be used to help people get through stressful experiences.
Chris Riback: Can we talk about you? You were born in France. You grew up in a small town, I understand in Kansas.
Dr. Annette Stanton: I did.
Chris Riback: I confess, I hear neither a French nor a small town Kansas accent, so I’m going to have to rely on the research that all of that was accurate.
Dr. Annette Stanton: It’s definitely not French. We were two when we moved back over. My dad was career military, and so it’s not French unfortunately. That’d be sort of fun, but this is my small town Kansas accent, maybe. Yep.
Chris Riback: Maybe. Okay, fine. I’m no linguist. But my sense was that you don’t hear about that background necessarily very often, and it struck me that perhaps a quasi-unique background must play a role in your unique take on stress and illness and recovery. Do you ever think about that? Is that accurate? What do you think about you translated into thinking about the world this way?
Dr. Annette Stanton: I know for sure one thing that did, and that was I did come from a town that had, when I was growing up, and I think still, because I’ve been back, has no stoplights. It is a truly small town. Part of what motivated me, I have to say, was growing up in a stoic Midwestern family, and we sort of didn’t talk about stressors very much. We didn’t talk about things that were hard. So, that’s sort of that quintessentially stoic Midwestern Kansas farm girl family.
Then, I have to say that my personal background is that I went to the University of Kansas, and then I did go on to graduate school and when I was studying for my PhD, my father got diagnosed with cancer. So, I both was in my family and watching my family go through this in our really stoic way, and at the same time, communicating in our own ways how important we were to each other.
At that same time, I was on my clinical internship at a big, big medical school, medical complex. I was beginning to watch people go through diagnoses of life-threatening things. I just became really fascinated in how some people become completely slumped by their disease, and in fact most people frankly do just fine. It’s not that it’s not hard, but most people recover well and do well in life, and so I became really fascinated. That sort of convergence of the personal and the professional, it started me on my career track of trying to figure out what helps and hinders people and then what we can do about it.
Chris Riback: Wow. I can imagine how influential that was. I guess there are many people who are benefiting today from the fact that you grew up in a very stoic Midwestern environment.
Dr. Annette Stanton: I hope so. I benefited from it.
Chris Riback: It sounds like you have. It sounds like you have. Just to close out, there’s all sorts of positive support obviously for the work that you do and you’re at UCLA and there’s incredible resource there. What role has BCRF played in your research?
Dr. Annette Stanton: I literally could not do my research without the support of BCRF. I’ve been here at UCLA for 15 years. Once I got supported by BCRF, I just can’t imagine being able to do … Well, no, I can’t imagine. It’s just simply true that I couldn’t do my research in the same way without the support of BCRF.
BCRF really allowed me to pursue these kind of unusual ideas. Project Connect Online came from a patient who was in my other research studies. It was fascinating and I wanted to try it out, and it’s really difficult to get support when you’re a little bit starting from ground up.
BCRF I think trusted the research that the researchers supported by BCRF do to trust me along with other vending agencies, but to trust me to do that kind of novel, “Let’s try this out and see where it goes, and then let’s develop it along the road into really a program of research that ultimately gets translated in the real world in the clinic.” BCRF enables that. I couldn’t do that kind of, especially that early phase research, without BCRF.
Chris Riback: Wow. Anyhow, that’s terrific that they do that and terrific that that’s enabled the work that you do. Thank you. Thank you, Dr. Stanton, for your time and obviously for your work.
Dr. Annette Stanton: My great pleasure. I’m so grateful to be able to do this work.
Chris Riback: [Narration] Hi. It’s Chris. I thought our conversation ended there, but I asked Dr. Stanton if there was anything else she wanted to discuss that we hadn’t gotten to. She reminded me that I was curious about her important endocrine therapy studies and strategies to help women stay with the therapy. Here’s what she said.
Dr. Annette Stanton: Well, first we needed to understand what was contributing to women not taking their endocrine therapy and what helped women take their endocrine therapy. By endocrine therapy, we’re talking about agents like [inaudible 00:40:07] and the aroma taste inhibitors that women often take often following their breast cancer treatments, surgery, chemotherapy, radiation, and those, and then continuing for years.
So, typically it’s a daily pill that women take for, the prescription used to be five years. Now it’s 10 years and sometimes longer, and it is a life-preserving treatment, so the importance of taking your endocrine therapy really can’t be underestimated.
So, we first tried to understand the factors that contributed to endocrine therapy non-adherence. That is women not taking their endocrine therapy as prescribed or what’s called non-persistence, women stopping their endocrine therapy.
We first did a study of more than 1000 women. It was a one time survey study, and we assessed a number of factors that we thought might correlate with, relate to women’s non-adherence, and this was self-reported non-adherence, which has some problems but does correspond at least to some extent with objective measures of adherence, and we were interested in those women who had stopped their endocrine therapy even though they had been prescribed to take it for a long time. So, we were interested in those factors.
In that first study of more than 1000 women, what we found was that a less trusting relationship with their oncologist, so a relationship with their oncologist that was not as trusting, not as positive as it could be, a lower perceived need for the endocrine need. So, they basically perhaps hadn’t been told or didn’t believe the research that shows that endocrine therapy is associated with better survival from breast cancer. More negative emotions about the endocrine therapy. Those kinds of factors were associated with more self-reported non-adherence.
Also, those women who had stopped their endocrine therapy also were more likely to report more depressive symptoms, and so they were more likely to be depressed than women who adhered to their therapy. They also reported more negative emotions related to their endocrine therapy, lower positive emotions.
The original idea in some of this research was that basically, it’s all side effects. Women don’t take their endocrine therapy because they have side effects from it and so stop taking it. We actually found that the factors I just discussed were more potent in their relationship with non-adherence, self-reported non-adherence, than were the side effects that we assessed.
So, that was a little surprising to us, and I’m not saying that side effects aren’t important. They really are, and there are several other studies that suggest that they are important, so side effects are important, but there are other factors that also can be actionable that we can intervene on that might help improve adherence.
Then, in another study funded by BCRF, this one, we followed women from the start of their prescription through several months. We actually had both self-reported adherence, and it was an objective indicator of adherence. Basically, it’s a little electronic cap that sits on your pill bottle and every time you open it, it’s assumed that you’re opening it to take a medication and so it records the date and time that you took it, and so you can measure daily adherence electronically.
There, we also found that depressive symptoms predicted lower adherence across the first month of being prescribed endocrine therapy. One of the factors that was important in predicting more depressive symptoms was lack of social support both by the oncologist and by women’s loved ones.
So, that kind of lack of support, depressive symptoms, and objective measures of adherence were our findings in another study. Now, we’re trying to translate those findings into action through beginning to test approaches to help women stay on their endocrine therapy, so we’re in the middle of that research.
Chris Riback: Thank you. I’m glad we got to cover that.
Dr. Annette Stanton: Oh, sure.
Chris Riback: That was my conversation with Dr. Annette Stanton. My thanks to Dr. Stanton for joining and you for listening. To learn more about breast cancer research or to subscribe to our podcast, go to BCRF.org/podcasts.