Reflections on Patient Perspectives and Survivorship from the 2013 Breast Cancer Symposium
Don S. Dizon, MD
My first experience with the Breast Cancer Symposium was as a representative of the National Consortium of Breast Centers on the Planning Committee in 2008, and a chair of the survivorship session that same year. It was such an honor to be involved, and given my interest in sexual health in cancer survivors, chairing the survivorship session was an incredible experience.
So, it was an even greater honor to be asked to come back as a poster discussant for the 2013 Breast Cancer Symposium, specifically to discuss survivorship abstracts, joining luminaries in the field of breast oncology in their own right: Lori Goldstein, MD, FASCO from Fox Chase Cancer Center, Julia White, MD from Ohio State, Jeffrey Razier, MD from Northwestern, and Ingrid Mayer, MD from Vanderbilt.
It is truly amazing to see a group of young investigators take up the cause of cancer survivorship, and the caliber of the work presented this year was impressive, spanning the phases of cancer survivorship, from newly diagnosed (“acute survivorship”) to the end of active treatment (“transitional survivorship”), into surveillance (“extended survivorship”), and finally long-term remission (“permanent survivorship”).
For any of us who have had the privilege of caring for women at the point of a new diagnosis, the difficult task of navigating the myriad options for treatment—whether it be surgical, medical, or radiation-related—in the context of the shock of being diagnosed with cancer and the fears of the present and of the future that universally go along with it is well recognized. However, one abstract demonstrated that understanding the factors that underlie management decisions are as important as the decision itself.
This was shown in the work presented by Andrea Covelli on behalf of her colleagues at the University of Toronto. They interviewed 29 women who had opted for a mastectomy despite being a candidate for breast-conserving surgery (n=15); or who opted to undergo a contralateral prophylactic mastectomy at the time of definitive breast surgery, despite lacking a clear indication to do so (n= 14).1 Major themes were identified, in particular the desire of women to exert control over their future as the primary motivation for more aggressive surgery.
What is interesting was their distillation of themes and how they influenced surgical decisions. The one that stayed with me was the role personal experiences and discussion with individuals outside of the doctor-patient relationship, seeing a relative or close personal friend experienced recurrent disease after lumpectomy, or listening to the anecdotes from friends and relatives of how poorly “a friend of a friend” did when she did not have a mastectomy, that seemed to bear on surgical decisions after a new diagnosis of breast cancer.
While provocative, it is a small study. It lacks interviews with women who opted to proceed with breast-conserving surgery under the same circumstances, as well as information about the role that the preoperative work-up might have played in the deliberation of surgical procedures. After all, being told that one has multiple abnormalities present (e.g., diffuse calcifications or otherwise “busy breasts”) after undergoing a preoperative MRI may have been sufficient reason for women to opt for mastectomy, rather than to live with the uncertainty of what their “busy breasts” might hold for the future.
Ultimately, if these results are true, we as oncologists must confront the false reassurance that patients are seeking when they request a mastectomy (or a contralateral prophylactic mastectomy). This fact was best phrased by Seema Khan, MD of the Northwestern University Feinberg School of Medicine, at one of the multidisciplinary breast management sessions when she said, “Bilateral mastectomies cannot protect one from developing distant disease from a known breast cancer."
The end of active treatment brings about many changes in medical and social support; the frequency of visits go down as patients are “congratulated” on reaching the end of adjuvant treatment with the expectation that the transition is one to be celebrated. In reality, the end of treatment is often a period of heightened anxiety as women have their treatment “weapons” taken from them.
The fear of recurrence can be problematic and, in its extreme, debilitating. Coupled with the reduction in visits to medical providers, women often see a reduction in their social support while also struggling to become who they were before the cancer. This transition into a “new normal” is not one that happens instantly; it is a process that comes with time and self-discovery.
This begs the question: what can we, as oncologists, do to help with this transition? In an abstract by Chun and colleagues from New York University, the feasibility of a lifestyle intervention utilizing exercise for overweight or obese women was evaluated.2 Although this small study only included 18 patients who agreed to participate, out of 40 women who were eligible, their results suggest that not only is the intervention feasible (72% of participants completed the program), but it can also yield significant reductions in weight loss and stimulate a greater enjoyment of exercise. Whether these outcomes are sustained, however, requires further follow-up.
During patients' first 5 years after a cancer diagnosis, the major emphasis of follow-up visits is surveillance for cancer recurrence. Still, other issues are also important to women after breast cancer, including the management of lingering side effects and any perceived psychosocial stress. How to meet these needs continues to be an issue, particularly in light of the fact that oncologists are often seeing patients at varying points in their cancer journey, and do not often have the luxury of time to explore issues. This is coupled with concerns from patients, who may worry that care for cancer outside of the oncologist's office is inadequate. These issues speak to the lack of a model to inform how to provide survivorship care for our patients.
Still, there are data that cancer surveillance can be done outside of the cancer center. This was again shown in the work presented by Sara Lupichuk and colleagues from Alberta Health Services. Their study involved breast cancer survivors who had transitioned to follow-up outside of the cancer center. Their results indicate that community-based follow-up rendered outside of the oncologist's office (or the cancer center) has no negative impact on cancer surveillance, and actually is associated with excellent adherence to endocrine therapy, annual physical examination, and appropriate mammographic follow-up.3
However, while medical needs are being met outside of the cancer center, other needs remain unaddressed, including issues related to psychosocial and sexual health. When asked if a nurse-led, telephone-based follow-up clinic would be useful, over 70% of patients were interested; however, almost a quarter of those asked were not.
These results were consistent with the data presented by Kelly Mitchell and her colleagues from Duke Medical Center. In their study, patients seen in their academic cancer center were surveyed to examine their preferences for survivorship care. Over 90% of those surveyed expressed a desire to stay in the academic cancer center, with approximately 15% wanting to proceed with care in the community or within a dedicated survivorship clinic.
The challenge of meeting this desire in the context of an oncology visit was clearer when the desire of these visits was more closely examined. While 90% stated cancer surveillance was the main priority of follow-up, over half also desired emotional and psychological support and nearly 40% wanted assistance with non–cancer-related health issues. Still, it is reassuring that only one in four patients wanted their oncologist to deliver general medical care.
Given the scope of what is desired and the reality of what is realistic, a study from Johns Hopkins indicates there is a potentially invaluable tool that can bridge this chasm. Elissa Bantug and colleagues evaluated the use of webinars to deliver information on cancer survivorship.5 An impressive aspect of these webinars was the reach of their series, which was viewed by participants in almost 40 countries. Their feedback was equally impressive; 90% of participants expressed satisfaction with what was presented. Regardless, over 70% of participants felt that this information would be ideally delivered in person, in the context of a clinical setting and by a familiar health care provider.
Putting It All Together
Although the studies discussed were very small, their findings are important because they point to questions that warrant more investigation. For patients facing surgical decisions, methods that increase the value of data in deliberation should be explored. For those completing primary therapy, it appears that tailored lifestyle interventions are feasible, though more work is needed to determine how best to increase participation. Finally, for those in follow-up care, shared care models are needed which encourage collaboration between primary and specialty care providers, including a clear delineation of duties.
Ultimately, in order to meet the needs of our patients, perhaps it is best to learn that when it comes to survivorship, our patients are best served when we learn to work as a community, rather than in silos.
I was honored to be a part of this year's Breast Cancer Symposium and I extend my heartfelt congratulations to those who participated in it.
1. Covelli AM, Baxter NM, Fitch M, et al. Taking control of cancer: Why women are choosing mastectomy. J Clin Oncol 31, 2013 (suppl 26; abstr 108).
2. Chun J, Friedman EB, Schnabel FR, et al. The breast cancer lifestyle intervention study. J Clin Oncol 31, 2013 (suppl 26; abstr 112).
3. Lupichuk SM, Railton C, Ko JJ, et al. Assessing the need for a nurse-led breast cancer telephone follow-up clinic in Alberta, Canada. J Clin Oncol 31, 2013 (suppl 26; abstr 111).
4. Mitchell KW, Houck K, Kimmick GG, et al. Patient experiences and preferences for survivorship care. J Clin Oncol 31, 2013 (suppl 26; abstr 110).
5. Bantug ET, Duffey KE, Peairs KS. Webinars as a tool for breast cancer survivorship education. J Clin Oncol 31, 2013 (suppl 26; abstr 109).