“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
The Nurse’s Role
How can the oncology nurse help foster this kind of open communication that patients with MBC and healthcare providers all agree is so vital?
Rosenzweig said the concept of anticipatory guidance that is often used in the pediatric setting can be applied in oncology. When parents are warned about the “terrible twos,” for example, they can prepare and talk about strategies with their provider before it happens.
In her practice, “that’s something we try to do and probably could do even more,” she said, “in terms of preparing women for the frequency of scans and the tension around getting the scan results,” as well as helping them cope with loved ones who sometimes don’t understand why patients with metastatic disease don’t go into remission and their treatment never ends. Nurses can help patients explain this to their families, she added, preparing their caregivers for what to expect in the next phase of treatment.
And, when the latest scan or bloodwork brings disappointing news? Rosenzweig said that, “it’s all about listening, and taking cues from the patient,” letting them know you are on their side and asking open-ended questions that give them permission to tell the nurse how difficult it is for them.
The recent Make Your Dialogue Count survey found that the communication needs and preferences for patients with MBC are not uniform and vary by their age and treatment stage.2
For example, at initial diagnosis, more women aged ≥54 years wanted to treat their breast cancer as aggressively as possible compared with their younger counterparts who expressed concern about adjusting to the treatment regimen and its effect on their lifestyle.