The Monday relaunch of the site advancedbreastcancercommunity.org was not the type of pink-ribbon event that is usually associated with October. Instead of touting the typical prevention and detection messages, the site focuses on an often sidelined patient population – the breast cancer patients who have to live as cancer patients, not necessarily as survivors.
Patient advocate Musa Mayer of advancedbc.org told MM&M the site is a unique place that focuses on patients who are unintentionally made “to feel like failures” amid October’s “relentless focus on celebration of survivorship.”
Metastatic breast cancer is cancer that typically spreads to the lung, liver and bones. In 2011, the American Cancer Society estimated that just over 39,000 women would die of breast cancer and that 97% of breast cancer deaths are among women who are at least 40. ACS also noted that the five-year survival rate among women diagnosed with breast cancer before the age of 40 is lower than that among women diagnosed later. The organization said the difference may be because the tumors are more aggressive or less responsive to treatment.
Ginny Knackmuhs, a board member of the all-volunteer Metastatic Breast Cancer Network said the site, which includes videos, resources and an online community, puts information about living with advanced breast cancer in one place, where patients with the disease can find it, and provides an opportunity to “get people thinking that metastic patients are part of the larger story of breast cancer.” At the same time, she said that although the site diverges from triumphant cancer-free stories that are normally associated with awareness, that it does have a positive component that often has to be teased out, even for members of the intended audience. As an example, she said she was recently talking with someone about cancer and asked “What is more inspiring but a young mother who knows she has a disease and knows her lifespan is going to be shortened, but she finds a way to go on?” This site’s community element has the potential to bring this out. Knackmuhs, a stage-IV cancer patient, added “somehow those stories don’t always get out.”
The website, which includes links to patient videos, news and resources, initially launched with financial support from Bristol-Myers Squibb. The latest iteration includes links to news, resources, tools and an online community. It also includes a link Novartis’ “Count Us, Know Us, Join Us” initiative that tries to show how many people are affected by advanced breast cancer – visitors help create a name mosaic if they are, or know, a person with advanced breast cancer.
Mayer, who will provide a link to the site, said it also provides a vital connection among patients whose condition and treatment can make them physically isolated, and a 24/7 resource can provide the information they need in an accessible format. “It means a great deal, and for the first time we are really seeing advocacy for women with metastic breast cancer,” she said.
Knackmuhs added that the site is not just a chance to connect with people who understand what it means to have and live with advanced breast cancer. “I think the other part of this site is to let people see the stories of people [saying] ‘this is who I got it. I was stage II and I was told I was fine’ . . .the reality is that cancer recurs and it’s not that person’s fault.”