October 13TH is National Metastatic Breast Cancer Awareness Day.
The U.S. House and Senate voted in 2009 to designate this day for metastatic breast cancer (MBC) awareness. As a metastatic survivor...thriver I’m glad we’re getting some needed and well deserved recognition. Awareness is overrated though.Rather than focusing on awareness let’s focus on PREVENTION, PREVENTION, PREVENTION.
When I was diagnosed 8 1/2 years ago there was no designated day, no awareness and definitely no prevention. Most of the people I shared my diagnosis with looked a bit confused until they heard the words “breast cancer” at which point they looked sad, concerned and a bit relieved that it wasn’t them. The only website I knew about for people with mets was more than a little depressing. One by one all the women I connected with died and I stopped visiting. 40,000+ Americans living with metastatic breast cancer will die this year....this is 40,000+ too many.
Pink does not represent me or my breast cancer experience. There’s nothing soft, flowery and pink about breast cancer, it’s harsh, unforgiving and non-discriminating.The simple fact is, if you have breasts, you are at risk. Folks living with mets also know the reality can be relentless and debilitating treatment. No, pink is not the color I associate with pain, scarring, suffering and death. I wonder if the other 154,999 men and women living with metastatic breast cancer feel the same way?
What is metastatic breast cancer? It is Stage IV - incurable, but treatable cancer that has spread from the breast to another area of the body. More often than not it has spread to the bones, brain, liver and/or lungs. I was lucky, my cancer only spread to one spot on my liver which was treated with radio frequency ablation and it worked, so far... Here in lies the ultimate rub, people with mets, even when they are NED ( no evidence of disease), like myself, still remain in the world of “So far...” or “For now...” It’s maddening, but we learn to live with it.
“To Thine Own Self Be True”
Recently I had the honor of spending almost a week at the Omega Institutein Rhinebeck, NY with an amazing group of women all living with metastatic breast cancer for a Breast Cancer Options (BCO) Retreat called, “To Thine Own Self Be True.” The retreat was generously sponsored by the Miles of Hope Foundation and the Omega Institute and was completely free for all participants.
When I was first invited by Hope Nemiroff, founder and executive director of Breast Cancer Options, I was a bit hesitant. First, a metastatic breast cancer retreat did not sound very fun, inspirational or uplifting. Second, I wasn’t actively in treatment as I’d been NED for 7 1/2 years and didn’t want to take a spot from anyone else. My third and final reason was completely selfish. I was afraid the women would resent me or feel I shouldn’t be there because I had no evidence of disease. I was wrong on all counts, my fears were unfounded and the retreat was one of the most transformative I’ve ever been on. These women were strong, sassy, informed, witty and committed to living their lives on their terms. I was, and still am, in awe of their willingness to let go, be completely in the moment and connect and support each other on so many levels. It was incredibly healing. My roommate Karen and I stayed up late into the night telling stories and laughing so hard no sound came out, our bodies shaking with joy and the release that only comes from a middle of the night, we have no idea why we’re still up, full fledged belly laugh. Moments like these occurred for everyone all throughout the week.
The program maintained a good balance between structured time and free time. The daily schedule included: meditation, breath work, educational talks, small and large group discussions and guest presenters. One day a group of healers from a variety of modalities shared their gifts; it was magical. Another day Vera, an artist, came loaded with craft supplies and we all created unique candle art. A fellow participant,Carol,whittled her candle into a single breast which seemed very fitting and cracked the group up. Charise Isis, a photographer spoke to us towards the end of the week about a project called “Grace” she’d been working on and showed photographs of women who’d all had breast cancer in various stages of dress and mostly undress. Charise offered to photograph anyone who’d like to be included in her project. Hands shot up. We were in! My favorite photo showed 8 beautiful, shining women standing arm in arm wearing smiles as wide as the sky without a shirt in sight. What a breathtaking moment! It epitomized what the 2ND Annual BCO Omega Retreat was all about...uninhibited JOY, GRACE and LOVE.
This year I again had the honor of attending the 3rd Annual BCO Options Retreat at the ever beautiful and always peaceful Omega Institute. Last year we were a group of 27 fierce, sassy women. This year we mourned the loss of 9 of our amazing friends. Nine women of strength and spirit, nine women with metastatic breast cancer who attended last years retreat died before the September 2014 retreat. This is so profoundly sad and senseless it's almost incomprehensible to me. When will it end?
- Approximately 155,000 women and men in the U.S. are living with MBC.
- MBC is the initial diagnosis for 6-10% of all new cases each year.
- 20-30% of people with breast cancer will go on to develop recurrent, metastatic disease.
- There are various types of MBC.
- MBC causes 40,000 deaths per year.
- Median survival rate is 3 years.
What can we do?
- Stay informed.
- Know the facts.
- Support research for MBC.
Learn more by visiting these websites:
- MBC Alliance http://www.MBCAlliance.org/
- MBC Network www.MBCN.org
- BCMets http://www.bcmets.org/
- METAvivor Research & Support, Inc. http://www.metavior.org
- Breast Cancer Consortium http://breastcancerconsortium.net
- National Cancer Institute http://www.cancer.gov
- AdvancedBC.Org http://www.advancedbc.org
Historic Collaboration: MBC Alliance Press Release: The Metastatic Breast Cancer Alliance is being formed by fifteen cancer charities and advocacy groups to transform and improve the lives of women and men living with metastatic breast cancer. Founding member organizations include: AdvancedBC.org, Avon Foundation for Women, Breastcancer.org, CancerCare, Cancer Support Community, Dr. Susan Love Research Foundation, Living Beyond Breast Cancer, Metastatic Breast Cancer Network, Research Advocacy Network, SHARE, Sisters Network, Susan G. Komen, The Breast Cancer Research Foundation, Triple Negative Breast Cancer Foundation and Young Survival Coalition. The Alliance is being funded in part by Celgene Corp, Genetech and Pfizer.