This is the final blog in BCRF’s three-part series, Thrivership After Breast Cancer. BCRF is exploring the nuances and realities of breast cancer survivorship: the emotional and physical challenges of the disease, the lingering effects of treatment, the latest in research to improve thrivers’ quality of life, and more. Read parts one and two.
Why is it important to fund research that improves breast cancer survivors’ quality of life? “Because, to me, living well is as important as surviving,” says BCRF researcher Dr. Annette L. Stanton.
Dr. Stanton has been a BCRF investigator since 2004 and is among the researchers BCRF funds who focus on life after breast cancer: what it looks like and how to improve it.
To end our series on breast cancer thrivership, BCRF spoke with Dr. Stanton about her research—including her focus on Black women’s breast cancer experiences—plus her advice for people who have just been diagnosed and those navigating long-term survivorship.
I’ve been focused for many years now on survivorship research. Although my team also does studies in pancreatic cancer, choroidal melanoma (eye cancer), lung cancer, and others, my primary focus has been on women with breast cancer. Primarily, I’ve been interested in both characterizing women’s experience as they go through breast cancer in the various phases—for example, the acute diagnostic and treatment phase, the reentry phase when women finish their primary cancer treatments and go from patient back to person—and then also working to predict psychosocial and other factors that help and hinder women. We translate those findings into interventions to optimize survivorship and help women live their best possible lives—even in the face of a breast cancer diagnosis.
I got my PhD in psychology. All clinical psychologists at the PhD level do a year of clinical internship. I came out to California for the first time for my one-year clinical internship at USC Los Angeles County Medical Center, and during that year, two things happened that were pivotal. One was that I got to see people who were diagnosed with cancer. And the major thing I noticed is that some people were swamped by the experience. They had a very difficult time recovering psychologically. But other people seemed to do very well in their psychological recovery—and even thrived. I became interested in how that could possibly be, and what predicted those different kinds of trajectories. That same year, my dad was diagnosed with cancer. I’m from Kansas, and I watched and experienced my quintessentially stoic Midwestern family cope with his diagnosis. Both my personal experience and professional experience that year got me fascinated with the processes of survivorship that still fascinate me today.
First, I would say, there is no “one size fits all” when we talk about what contributes to optimal survivorship. I think the most common psychological challenge is certainly fatigue, and that’s not only a psychological challenge but really a biopsychosocial experience [encompassing biological, psychological, and social factors]. My great colleague and fellow BCRF researcher, Dr. Julienne Bower, does fantastic work on fatigue. Then, once primary treatments are completed, certainly fear of recurrence is a very common experience. During and after treatment, cognitive problems like the classic “chemo brain” are common, and pain can be an experience for a subset of women.
Although it’s not a problem for most women with breast cancer, I’ve been very interested in clinical depression and anxiety after a diagnosis. Depression is not only painful in and of itself, but it’s associated with several other important outcomes. We did a large study that was partly funded by BCRF where we followed women after diagnosis and did multiple assessments. In that study, we found that shortly after a diagnosis through the next 16 months, 16-17 percent of the women had a major depressive episode. Nearly all of that group was in the one-third to 40 percent of women who reported high depressive symptoms across the course of the study. And approximately 20 percent of women initially had very high depressive symptoms that dropped dramatically over the 16 months. Another 40 to 45 percent had no or low depressive symptoms from diagnosis through the next 16 months. Depression absolutely doesn’t affect a majority of women with breast cancer, but it is certainly a problem for some.
We all know that Black women experience marked disparities, most notably in breast cancer mortality. In terms of psychological research, much less of it focuses on Black women than on non-Black, non-Hispanic white women. The fact that there is just so much less research on Black women’s survivorship was one of the motivating factors for me to [explore it]. We know from other research that compared to their non-Hispanic white counterparts, Black women have lower physical health–related quality of life and functioning after breast cancer and greater perceived stress. There’s some indication they experience greater fear of mortality and recurrence. They have unmet needs in supportive care and much more financial distress. And obviously we’re not talking about disparities that reside in the women themselves; we’re talking about disparities that are often created by social structures, like lack of access to high-quality medical care, inadequate side effect management, and so on.
I am incredibly honored to work with a community partner named Reverend Tammie Denyse, who runs a nonprofit called Carrie’s Touch that focuses specifically on Black women and provides support and education. She was really interested in what’s called the Strong Black Woman Schema. It’s a historically grounded schema that’s baked into the experience of being enslaved; to survive, many Black women had to present an image of strength, prioritize caregiving for others over self-care, suppress emotions and not accept support, and constantly work to attain success with insufficient resources. Tammie came to me with this idea and felt that although many of them were very important to survive—literally physically survive during enslavement—they can also impede the breast cancer survivorship experience. In Project SOAR (Speaking Our African American Realities), we’re studying how the Strong Black Woman Schema affects outcomes such as depression, fatigue, and cognitive problems in Black women with breast cancer—along with some real strengths in Black culture—to develop resources for Black women.
First, there isn’t any right way to navigate the experience. That said, we have found some things that help and some things that hinder. Over the years, one of the things we have consistently found is that trying to push the breast cancer experience out of your head and out of your heart—trying to avoid and suppress it—just doesn’t work. There’s good evidence that the more you push away a psychologically important experience, the more it sort of pushes back at you. Avoidance is often not only unhelpful but can be harmful in terms of predicting higher levels of depression. That’s not to say that all avoidance is bad. It’s wonderful to intentionally take a break from breast cancer and have times when you don’t focus on it at all.
So, if you’re not avoiding, what does help? We have found several things, and we talk about them as approach-oriented coping. One of the things we see that is beneficial is seeking and accepting help from friends, family, and your oncologic team. Often, women with breast cancer have spent their lives taking care of other people, so accepting help is not all that easy—but it is important. If you can tell a friend you need a ride to chemotherapy or a meal, that can really help you and be a gift to other people who want to help. Actively accepting the reality of the cancer experience can also help. Find a safe place where you can express your emotions and not always have to be strong and positive. That may just be a particular friend or more than one friend, it might be your partner, it might be somebody special on your oncologic team, a psychologist or other psychological health professional, or a support group. Learn about what’s going to be good for you in your survivorship. Maybe, for example, you begin to engage in physical exercise and those sorts of things again. Identifying what you need in survivorship and problem solving to find solutions can be helpful.
First, congratulations to you and your body for completing treatment. The “reentry phase” after treatment can be really rocky for some women, though. It’s the first time that many women are really hit with the psychological experience of breast cancer. During active treatment, you may be very focused on treatment itself. After treatment, you’re not seeing your oncologic team as often. Your family and friends are celebrating the end of your treatment and may be expecting you to be that “pre-diagnosis you.” You, though, might be tired. The psychological ramifications might just be hitting you.
It’s important to know that you’re not alone in this feeling. There’s a lingering experience and sometimes it gives you the opportunity to really deal with what you’ve been through. You might need to educate your family and friends that while you may be done with treatment, you still feel tired and foggy and are still dealing with this. Let your closest people know that it’s not done for you yet. That reentry phase is also a time you might seek professional help.
One easy thing to do is to write down what’s bothering you and bring your questions and concerns up as early as you can in an appointment. Otherwise, you might leave them to the end, and they won’t get done.
Another easy thing to do is to label that it’s not easy for you. Say, “You know what: It’s not easy for me to bring this up. But I’m really having problems with X.” Saying how difficult something is and labeling it can help.
In some ways, electronic medical records have helped us have difficult conversations. You can email or message your providers, so you don’t have to say the issue out loud.
It’s always a risk to bring up something difficult but try bringing it up. If the response isn’t satisfying, say, “You might not be able to talk to me about this, but I need somebody to talk to me about this. Can you give me a referral?” Sometimes, women need to change care teams because the team doesn’t have someone with whom the woman can have those important conversations.
I could not have done this research but for BCRF. A focus on survivorship is crucially important. To use depression as an example, women who are depressed are three times less likely to adhere to their medical regimens. That has direct consequences on life and survival. If we don’t pay attention to women’s psychological status, we are affecting their health much more broadly. BCRF donors have enabled research that not only saves lives but helps women live well—to live with meaning and purpose. To me, living well is as important as survival.
Read part one of BCRF’s Thrivership After Breast Cancer series on common physical and mental symptoms thrivers experience and BCRF research here. And find part two on the unique challenges of young and elderly breast cancer survivors here.
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