On a Thursday night at the Adelphi Breast Cancer Hotline and Support Program, you will often hear peals of laughter coming from the support group room. The laughter in this room is surprising given that the room is filled with women diagnosed with metastatic breast cancer; it even surprises the women when they first join. Metastatic breast cancer is breast cancer that has spread to other parts of the body, typically the bones, liver and lungs. Women diagnosed with metastatic breast cancer will live with it for the rest of their lives.
“Metastatic breast cancer is usually fatal, but not hopeless,” said Madeline Ciancuilli, a metastatic breast cancer warrior of 10 years.
The women in the metastatic group are part of a sisterhood they did not apply to join. There are between eight to12 women in the group sharing stories with each other and the social worker facilitator. The women are sharing stories about their ongoing fight with the disease and certainly there is more than laughter happening during a group meeting. There are sad moments and triumphant moments, too. The sadness comes from learning that a member’s course of treatment is no longer working, and the triumph comes from finding out one of the women received clean scans from treatment that does work. A woman will be on a treatment until scans show that her cancer is growing and the treatment has stopped working. In the support group, the women share their stories about how they have continued to be strong when their treatment stopped working. They comfort each other in a way that no other person can. They remind each other when one treatment stops working that there are still more treatments. The women work with their doctors to find the next treatment that might work. This specific type of bond creates opportunities to celebrate all of life’s other victories.
“Support groups are great, however a metastatic breast cancer group is a whole new world,” said Ciancuilli, who is a three-time group member.
Women who are diagnosed with breast cancer are told to arm themselves with the most knowledge they can, to be their own best advocates. Metastatic breast cancer challenges women to learn so much more.
Women are attempting to live their lives to the fullest with metastatic breast cancer, and they are relying on other women who share in their experiences. They are not alone.
To learn more about the Adelphi New York Statewide Breast Cancer Hotline and Support Program, visit the website breast-cancer.adelphi.edu or call 800-877-8077.
Erin Nau, MSW, is the counseling and education coordinator for the Adelphi NY Statewide Breast Cancer Hotline and Support Program.