Breaking Out of Breast Cancer Isolation

When this patient with metastatic breast cancer couldn't find a way out of isolation and depression on her own, a serendipitous evening with women confronting the same diagnosis did the trick.

For me, cancer has been both isolating — when I feel like none of my family or friends can really understand what it's like to be confronted with a stage 4 diagnosis and all that it means in the world of breast cancer — and and unifying — when I feel closer to those same friends and family than I have in the past.

These are, of course, emotions and reactions everyone has in their daily life. They are amplified in the case of any illness and, I believe, especially so with a diagnosis such as mine. There is always a need to balance those two conflicting responses to life. Since emotions with cancer run strong and definitely unevenly, I find myself swinging between the two extremes whenever there's added stress.

I've written before about the importance in my own life of exercise and calming practices to smoothen and deepen my experiences, but when I was at the extreme of the more negative reaction to metastatic disease — that is, I felt alone, isolated, depressed, stressed, you name it—the Wellness House in Illinois happened to hold an evening program that gave me a chance to look at things from a fresh perspective.

How could I be alone in a room filled with others so like me? Yes, of course we each come to cancer with different experiences and coping mechanisms and temperaments, but if there’s anything that can serve to cross those differences, it’s a life-altering diagnosis. So how could I be alone? I couldn’t.

The night, featuring two nurse navigators, whose job it is to help guide patients through treatments, was organized by the Metastatic Breast Cancer Network (mbcn.org). Given the topic was about metastatic breast cancer, I couldn't claim to be the only one who "understands" in this audience.

Questions about the appropriate frequency of scans, active treatment lengths, how to communicate effectively with an oncologist, why one person's treatment might differ from another with a similar diagnosis and a question about what ER/PR/Her2+/triple negative mean for treatment decisions led to straightforward information sharing or discussions.

The questions from others, while not always giving me information I can use in my own treatment (reinforcing the idea that each cancer is different), did serve to make me feel less alone. Here were women from all over the state, all of them living with metastatic breast cancer, and every single one of them searching for the best ways to improve their lives.

They were honest and not afraid to voice what they questioned as possible missteps in their treatments, they wanted suggestions, ideas and answers whenever possible. They were a sophisticated bunch that provided just the punch of "you're not alone" I needed at that time.

If you are feeling isolated and confused, I urge you to check with your hospital and the MBCN to find events or groups that will encourage you to step out of that dangerous spiral. Many of us with metastatic disease choose to live with hope and energy, and if that is what you want for yourself or for a loved one, the first step could be as close as a phone call or website click away.