When I was diagnosed with breast cancer, I was given a series of brochures, each more ominous than the last. I started with “For Women Facing Breast Cancer.” This 48-page publication includes chapters such as “Why You Should Get Prompt Attention” and “Not All Lumps Are Cancer.” Well in my case, they could have added a chapter: “…And Then Again, Sometimes They Are: Gee, It Must Really Suck to Be You.”
Next up was “Mastectomy: A Patient Guide” and a 94-page booklet called “Breast Cancer: Treatment Guidelines for Patients.”
“Treatment Guidelines” featured a two-page flow chart showing the work up process for Stage I, II and some Stage III breast cancer. You would have to go to the North Woods during the opening days of deer hunting season to see a comparable display of bullets and arrows.
I am a Phi Beta Kappa graduate of the University of Illinois and I struggled to understand this diagram. When my mets were discovered it didn’t matter–neither booklet covered Stage IV issues.
At Wellness House, a local group that hosts support groups and programs for cancer patients, I browsed the library shelves for Stage IV material. I found Musa Mayer’s book as well as a three-panel brochure called “Diagnosis Metastatic Breast Cancer.”
That was my introduction to the Metastatic Breast Cancer Network. MBC is very different from early stage cancer. Learning about other people in my situation was a huge help.
Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network (MBCN) in 2004. MBCN is a national, independent, patient-led, nonprofit advocacy group that provides education and information on treatments and coping with the disease.
“Nina would not accept being ignored by the breast cancer community,”says Ellen Moskowitz, MBCN’s volunteer president for the past five years. “People, need to know we are here—155,000 of us living with metastatic breast cancer in the U.S.– the entire breast cancer community needs to embrace all of us with breast cancer, not just those who may think they are cured.”
After more than five years of volunteering with MBCN, Moskowitz recently stepped down as president. “We started with 30 members and now have close to 2,000 members across the country and scattered members across various oceans!” she says. “Our new president is Michele Przypyszny and I know she will work hard to grow our mission and connect with you.”
Moskowitz is proud of the projects she completed with the help of other MBCN volunteers. She teamed with volunteer Suzanne Hebert to plan, organize and edit the pamphlets in the MBC kit, including “Diagnosis Metastatic Breast Cancer.” She credits volunteers Shirley Mertz and Susan Davis with leading MBCN’s successful drive to have both the House and Senate declare Oct. 13 National Metastatic Breast Cancer Awareness Day.
Moskowitz is also enthusiastic about the recently launched MBCN website. Volunteer Ginny Knackmuhs led this effort which represented more than a year of planning and ongoing work. The web site features links to videos from the group’s annual conferences, inspirational stories and links to mets-specific resources.
Last October, a journalist asked me for some expert and patient contacts for an National Metastatic Breast Cancer Awareness Day article. I emailed the MBC Network and Ellen responded. Later she asked me if I would be interested in volunteering with the group and of course I said “Yes!”
How about you? What groups do you support?