Having metastatic breast cancer is like being stuck in the middle seat on an airplane: You have absolutely no status. No one wants to trade places with you. Your personal space is seldom respected. And most people will pretend you aren’t there. (Of course that’s true regardless of your seat assignment. Nobody wants to sit next to a Chatty Cathy.)
Women with MBC literally don’t count. Some estimate that there are 160,000 people living with MBC in the U.S. The reality is we don’t actually know how many of us are out there.
“One hundred and sixty thousand is an estimate only,” author and advocate Musa Mayer told Elaine Schattner last year. “Nothing more definitive is available,” she said, explaining that because the NCI and SEER database record only incidence, initial treatment and mortality data, what happens in between — in terms of recurrence and the exact number of women living with metastatic breast cancer — is undocumented.
“It is as if these metastatic women are invisible, that they literally don’t count,” she indicated. “And when we don’t count people’s needs, we can’t provide or plan for them.”
Neither seen nor heard
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.
“As a woman living with metastatic disease, I had felt isolated and excluded from the very groups that were set up to help woman diagnosed with breast cancer,” Shulman explained in 2007. “The breast cancer community had become a place for ‘survivors’, not for people living with breast cancer every day of their lives. We were not being seen or heard. No one was trying to meet our needs. No one was listening.”
Women with MBC don’t fit in, observes Ellen Moskowitz, who recently stepped down as MBCN’s volunteer president. “We don’t fit in with all the cheering about ‘beating the disease’. We have to learn how to live with the ever-present anxiety of knowing it is a matter of time till the present treatment stops working. We are left trying to explain to friends and family why we are still on chemo. The world likes closure and we have no closure.”
Sisters Are Doing it for Themselves
In 2009, Dian Corneliussen-James and her friends attended a meeting which began with cheers and applause for breast cancer survivors who then testified to the power of clean living, positive attitudes and being courageous. Perhaps fearing a rebuttal, the moderator didn’t allow Corneliussen-James or her friends to speak.
Several years earlier, in the friends had formed METAvivor, a nonprofit, volunteer-run group. In addition to providing support and awareness for people with MBC, the group funds an annual research grant.
Wait ‘Til Next Year
Treatment does not end with MBC. So what are we? Bigger than a breadbox?
Last fall CURE Magazine reported that patient advocates arriving at the San Antonio Breast Cancer Symposium (SABCS) felt renewed urgency upon hearing that Elizabeth Edwards died.
If I felt bad when I learned Edwards died, I felt worse when I read about the patient advocates marshalling for some really big news in the wake of Edward’s death. Because they might as well not have bothered unpacking their suitcases.
“San Antonio [is] going to be the year of adjuvant and neoadjuvant therapy, with very few results of interest for patients in the metastatic setting (at least from my quick review of the program),” wrote Dr. Kathy Miller in her blog at www.medscape.com. “But some very interesting studies in the adjuvant and neoadjuvant setting.”
Yep. Sloppy seconds for MBC patients yet again. Of course SABCS is only one meeting. There will be others. But really, how much research and funding will there be for people with metastatic breast cancer? Not nearly enough.
METAvivor’s 5 MBC Misperceptions
Myth: Research funding is well balanced for all stages of cancer.
Reality: 90% of cancer deaths result from Stage IV cancer, but only 2% of research funds are devoted to stage IV.
Myth: Metastatic breast cancer is rare.
Reality: 30% of breast cancer patients progress to Stage IV. Many more initially present with metastatic breast cancer.
Myth: Healthy lifestyles, timely screening and early detection prevent metastasis.
Reality: Metastasis happens despite vigilance and precautions. Even Stage I patients can and do metastasize.
Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year.
Reality: New treatments extend life for some, but survival remains elusive. Over 40,000 women and men have been dying annually since 1987.
Myth: Stage IV breast cancer patients are well supported by many groups.
Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to Stage IV.