Joan Mancuso: Metastatic Breast Cancer Advocate


When and how did you get involved with SHARE?

I was tremendously lucky to cross paths with Kathy Hynes-Kadish at a one-day conference for metastatic breast cancer survivors in October 2009. During our conversation, I mentioned wanting to volunteer but wasn't sure where. She told me about SHARE, and how SHARE was looking to add more volunteers to its helpline. I was at the helpline training sessions within two weeks and thankful to have been told about this great organization.

In what ways have you been involved with SHARE?

Besides the helpline, my volunteer role at SHARE has expanded to facilitating one of the weekly telephone support groups for those living with metastatic breast cancer. I'm also a member of SHARELeaders, a group of survivors who offer presentations on clinical best practices, new treatments, changing standards of care, and controversial issues. Leaders advocate before regulatory commissions, congressional representatives, and scientific advisory boards, and partner with pharmaceutical companies to bring the patient perspective to the table.

I have been proud to represent SHARE at scientific conferences, the Department of Defense Breast Cancer Research Program as a consumer reviewer of scientific grant proposals, Columbia University's Institute for Cancer Genetics as a grant reviewer, the National Breast Cancer Coalition's annual Advocacy Summit and Lobby Day in Washington, and in the media. Last October I was honored to be a spokesperson for SHARE and the metastatic community on a radio media tour of 15 stations around the country, answering questions about metastatic breast cancer, providing information about SHARE's education programs and support programs, and increasing public awareness. I also contribute stories to the Mets Matters newsletter, a great resource for those living with advanced breast cancer.

How has SHARE helped you?

SHARE was the start of my journey to becoming a self-advocate and coming to terms with having metastatic breast cancer. It has also given me the greatest gift of helping others and becoming part of a community that embraces and empowers survivors. I have learned and received so much from SHARE's staff, its education programs and webinars, helpline peers and co-facilitators, and survivors who have joined the telephone support groups. SHARE has reached out in tremendous support of those of us living with metastatic breast cancer, for which I am grateful. SHARE provides a safe environment to express my feelings, support others, and be supported.

What is your 40th anniversary wish for SHARE?

40 years is a wonderful milestone, but if I had my wish cancer would be cured tomorrow and we would no longer need SHARE. But until that time, I wish for SHARE to continue to reach out locally and nationwide to embrace breast and ovarian cancer survivors and those living with advanced cancer and to continue to receive funding to offer and expand its valuable programs.