[Updated on September 21, 2012]
When any of us is first diagnosed with breast cancer, one of our first visceral reactions is fear. And there is a good reason for that. Close to a third of those of us who are diagnosed with invasive breast cancer will develop mets. Even for those of us diagnosed with DCIS, non-invasive breast cancer, up to 10% will develop invasive breast cancer, and that 10% will then be at a 30% risk for developing mets. And yet, a miniscule percentage of research funds goes to finding effective treatment, prevention and cures for metastatic breast cancer.
Meanwhile, even though our universal gut reaction to breast cancer may acknowledge its deadliness, public perceptions about breast cancer do not reflect reality. Too many myths continue to be espoused, including, in my opinion, the move in some medical circles to start referring to patient care for mets as ‘chronic disease management.’ Some of these myths are as follows, from the website METAvivor.org:
- 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.
Here is a link to an article by Dian M. Corneliussen-James, known as ‘CJ,’ who founded METAvivor.org, making the case for changing the breast cancer conversation — and the funding for treatment and research — to reflect these realities. 30 Percent for 30 Percent.
Becoming A Fearless Friend
Friend and author Gayle Sulik asked me recently to put the hashtag #occupythecure on a teeshirt. We were both still reeling from the death of our beloved friend and sister blogger Rachel Cheetham Moro, as were many of our sisters in the blogosphere. I was musing on this phrase in visual terms, as I often do, and designed the image on the right. The women pictured in it — beautiful and smiling in life — all died of metastatic breast cancer. Starting in the upper left and going clockwise, they are: Susan G. Komen; journalist Molly Ivins; blogger and astrophysicist Susan Neibur; poet, writer and activist Audre Lorde; dear friend and sister ‘bitchblogger’ Rachel Cheetham Moro. Pink ribbons did not save them. Death overshadowed and overpowered them in the end. They represent for us all the ultimate cost of breast cancer.
I have felt personally aggrieved by the loss of each one of them. Susan Komen’s sister, Nancy Brinker, has yet to steer the organization she founded in a direction that acknowledges the reality of her sister’s diagnosis and death in her thirties. That famous ‘promise’ she made to her continues to be broken, in my opinion. Until Komen, along with many other fundraising organizations, stops publicly expounding the myth that screening mammograms constitute ‘prevention,’ until they ensure that 30% of their funds are spent directly on helping women and men with metastatic breast cancer, and on research to stop it, their mission is meaningless. As for the other women pictured, I met three of them personally — Rach, Susan and Audre Lorde. Molly Ivins is one of my personal heroes as a writer, my Goddess of Snark.
And so, I’m beginning a long-overdue page on this blog for those with mets. And it has its own tab, under ‘Mets,’ at the top of my home page. At the same time, I have also offered C.J. my geekitude and have started a blog for METAvivor.org. You can find it at The METAvivor Blog. There are many mets-specific links and resources there, as well as personal stories shared by women of all ages who live with metastatic breast cancer.
In addition, there is information available about all aspects of cancer at the Info/Resources tab above. And do click on the Category link for Metastatic Cancer on the sidebar for posts I have written on the subject.
And please feel free to make suggestions.
Some blog sisters with mets:
- But Doctor, I Hate Pink by Ann Silberman
- ihatebreastcancer by Katherine O’Brien
- Donna Peach by Donna Peach
- Dancing with Cancer, Living with Mets by Jill
- the Assertive Cancer Patient by Jeanne Sather
- Little Obstacles in Our Way by Ronda Little
- Regrounding by Lori Marx Rubiner
- The Dirty Pink Underbelly; the tagline says it all: ‘MBC is the dirty pink underbelly of breast cancer; the part that exists but is not glamorous…for which no one marches or holds parades.’
Then there are the wonderful blogs written by a few of the sisters we have lost to MBC; a few examples:
- Rachel’s blog at Cancer Culture Chronicles
- Susan Neibur’s blog at Toddler Planet
- Daria Maluta’s blog at Living With Cancer
- Ashley: Warrior Mom by Ashley
Those of us who do not have mets cannot feel safe or comfortable with the status quo. That 30% has included too many of our friends, and it could end up including us. In the meantime, we need to step up to our sisters and brothers with mets and be ‘fearless friends.’