What can be done to improve quality of life for people with metastatic breast cancer (MBC), which tends to lag in comparison to the experience of those with earlier-stage disease?
Recommendations made by patients living with MBC and health care providers who are cancer survivors will soon be disseminated throughout the health care system.
The guidelines came out of the Metastatic Breast Cancer Collateral Damage (MBCCD) Project, which culminated in a two-day, in-person think tank that included 10 women and men with MBC and 28 health care practitioners who have been treated for cancer. The practitioners represented an array of specialties, including nurses, oncologists, surgeons, physical therapists, psychologists, social workers, palliative care specialists and faith leaders.
The think tank’s goal was to suggest ways to reduce the lifestyle disruption that can arise from sequential and often continuous treatments for breast cancer. Its findings were discussed in a presentation during the 2017 Palliative and Supportive Care in Oncology Symposium.
The MBCCD Project is run by the Dr. Susan Love Research Foundation, whose mission is to engage the public and the scientific community in innovative research aimed at eliminating breast cancer. Susan M. Love, M.D., M.B.A., was the study’s senior author.
During the think tank meeting, those gathered considered the results of The Health of Women Study, an MBCCD Project survey that included 515 respondents who answered questions about their quality of life.
The questionnaire, which launched in July 27, 2016 and closed Sept. 25, 2016, was based on previous surveys issued by the foundation. In one earlier survey given to people with MBC, respondents said that the disease had negatively affected their physical, functional, psychological, emotional, social, vocational and financial experiences, according to a webpage about the project. Respondents also reported that those who do not have MBC, including health care providers, tend not to fully understand the impact the disease can have on lifestyle.
A survey before that included nearly 12,000 men and women with and without breast cancer, and found that people with MBC have a poorer quality of life compared with those who are healthy, or who have survived non-metastatic breast cancer.
Coming to Conclusions
With their wide-ranging expertise, members of the think tank aimed to craft recommendations that would not only meet patient needs, but be achievable within the current health care delivery system.
The group’s suggestions included increasing access to clinical trials; offering centralized resources for financial assistance; addressing sensitive or little-discussed issues, such as fertility and sexuality; and expanding awareness about palliative care programs.
The foundation is finalizing the recommendations, and plans to disseminate them widely to health care providers, patients with MBC and family caregivers.
“Having a panel of people seated on both sides of the cancer diagnosis and treatment conversation resulted in recommendations that did not shy away from addressing complex issues, while simultaneously having a high probability for dissemination and implementation within the health care system,” the project’s authors wrote.
One member of the MBCCD Project’s Advocate Task Force, Lori Marx-Rubiner, helped the foundation enlist many of the provider-survivors who participated in the think tank. Marx-Rubiner, who died of MBC on Aug. 2, 2017, is featured on the MBCCD Project’s web page, where she expressed some of her thoughts about the meaning of the effort.
“As an MBC patient, it’s easy to feel marginalized,” Marx-Rubiner is quoted as saying. “We are often shunned from mainstream breast cancer communities as the embodiment of early-stage patients’ deepest fears. Research to understand and change the deadly nature of our disease is difficult and grossly underfunded.”
“This project is a remarkable opportunity to change how we live with our disease. No one project can solve the challenges of MBC, but this one will have an authentic and positive impact on how we live with it, and how our health care system can better support us. I know my time is limited, probably by my disease; using it toward real and sustainable change is an honor, and I’m grateful for the opportunity.”
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