Research advances in the field of breast cancer have led to less aggressive treatment options and a good prognosis for women with early-stage disease, but for women with metastatic breast cancer (MBC), it is a different story.
While treatable, MBC remains incurable. According to the Metastatic Breast Cancer Alliance, an estimated 150,000 women and men are living with metastatic breast cancer in the United States, and 40,000 individuals die from the disease each year—accounting for 7 percent of all US cancer deaths.
“These women can sometimes feel like they are ‘the elephant in the pink room,’” explained Margaret (Peg) Rosenzweig, Ph.D., C.R.N.P.-C., A.O.C.N., F.A.A.N., professor, Acute & Tertiary Care, at the University of Pittsburgh School of Nursing. Rosenzweig also maintains clinical practice as a nurse practitioner for women with breast cancer at the university’s cancer institute (UPCI).
“There’s that sense that nobody in the waiting room wants to know someone with metastatic disease, because it’s everyone’s worst fear,” she continued. Some may feel unwelcome in the “pink ribbon world,” because they haven’t—to use the sports analogy that comes up often for all cancer types—“beaten their cancer.”
Another issue many patients with MBC face, she added, is coping with loved ones who sometimes don’t understand why they don’t go into remission and are never done with treatment.
Yet this pattern of ongoing treatment and careful monitoring is, in fact, a welcome improvement. Rosenzweig has been able to witness the course of MBC change for many women, into something more akin to a chronic disease model. “We expect that women are going to do well, that they’re not going to be incapacitated by the disease, though they have to make time for treatment and follow-up.”
The Educated Patient
Key to this “new normal” for many patients with MBC is having the knowledge and confidence to communicate frequently and openly with their providers and participate fully in treatment decisions. That ethos underpins efforts like Make Your Dialogue Count to improve the MBC patient–provider conversation.
This point was driven home in sharp relief for Ayanna Kalasunas, who found out just one month after becoming engaged that she had stage 4 MBC in January 2013. She appreciated that her oncologist then and now, David M. Mintzer, M.D., Chief of Hematology-Oncology at Pennsylvania Hospital, an affiliate of the University of Pennsylvania Health System, fully explained her diagnosis and treatment course, put her on Herceptin (trastuzumab) immediately to ease her mind, and also continues to provide websites and fact sheets when she starts a new therapy to make sure any questions she has get answered.
“He has a strong opinion about my treatment, but it’s an educated one, and he explains how he arrives at his decisions,” she explained. That collaborative process with other specialists at the hospital reassures Kalasunas, who comes to her appointments well-informed and unafraid to ask questions, because of the rapport she has with her healthcare team.
“The stakes are really high, so where I probably didn’t question my doctors in the past, I feel that sense of urgency now,” she stressed. “I’ve been diligent from the start, and I think it’s really important that patients remember it’s their voice and they have rights … like any working relationship, it’s a two-way street.”
Now an active blogger and member of the board of directors of the advocacy group Living Beyond Breast Cancer, Kalasunas did not let her disease define her. She went on to marry her fiancé in 2014, buy a home in Philadelphia, and continues her treatment with her original oncologist at the Pennsylvania Hospital.