Handcrafted tank top from a “Komen Bandit” demanding support for Metastatic Breast Cancer
October 13th is National Metastatic Breast Cancer Awareness Day, an official day of recognition to encourage all people to become more informed and aware of metastatic breast cancer.
Metastatic (Stage IV) breast cancer is cancer that has spread from where it originated to elsewhere in the body, usually the bones, liver, lungs, and brain. It is the initial diagnosis for about 5 percent of breast cancer cases each year in the United States. However, and surprising to many, 20 to 30 percent of people who were initially diagnosed with an early stage breast cancer eventually go on to develop metastatic disease. Such recurrences can happen even after there has been no evidence of disease for 15 years or longer.
Metastatic breast cancer is incurable, and treatment is life-long. Eventually, every drug that is used to slow the progression of the disease fails. Data from the National Cancer Institute shows that the five-year survival rate for people diagnosed with metastatic breast cancer is still only about 20 percent, and the average prognosis is only two to four years. Nearly 40 thousand women and hundreds of men die of metastatic breast cancer every year, a number that has barely changed in four decades despite the billions of dollars raised for breast cancer.
There is little attention to metastatic breast cancer in mainstream culture. When the disease does get attention, the light usually shines on the good, strong, positive, and hopeful side of cancer, the obituary of someone who fought courageously but eventually succumbed to the disease, or the hopeful stories and reports about incremental medical advancements. But the regular story arcs of triumphant survivorship do not apply to this population of patients who do not finish treatment and seldom win the fight. As a result, there is very little understanding of the realities of this disease.
An Alliance for Metastatic Breast Cancer
A new alliance formed by fifteen cancer groups, the Metastatic Breast Cancer Alliance, plans to work “towards a time when all patients with metastatic breast cancer and their caregivers can access the care and services they need, and find real hope in research focused on prolonging their lives,” states Musa Mayer, Founder, AdvancedBC.org. The first project will be to assess gaps, duplication and opportunities in the field to reach a consensus on a path forward in addressing the unique needs of those living with metastatic breast cancer. The Alliance will issue a status report in early 2014 and also plans to advance metastatic research and public policy to address the needs of this population. The Alliance recently released a video explaining the need for the group.
Founding member organizations of the Metastatic Breast Cancer Alliance 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 funded in part by Celgene Corporation, Genentech and Pfizer.
I hope the Alliance will also address mounting concerns over the commercialization and trivialization of breast cancer, pinkwashing and profiteering, the lack of transparency and accountability on the part of corporations and breast cancer organizations alike, and concerns over the lack of attention to the diverse experiences and difficult realities of this disease.
Related:
- “Metastatic Breast Cancer” in the Beyond Awareness Workbook.
- “Frankly Speaking About Cancer: Metastatic Breast Cancer” by Cancer Support Community. Download here.
- “New, Metastatic Breast Cancer Alliance Sets a Cooperative Tone,” by Elaine Shattner, Huffington Post.
- “Re-learning the lessons from Elizabeth Edwards’ death: Medical Progress and Stage 4 Breast Cancer,” Oxford University Press Blog.
- “Clifton Leaf: asking the difficult questions,” Marc Beishon, Cancer World (PDF)
- “The Right Trials,” Breast Cancer Consortium Research Brief
- Jody Schoger discusses the Metastatic Breast Cancer Network’s annual conference, held recently in conjunction with the MD Anderson Cancer Center in Houston, TX on her blog, Women with Cancer.
- Lisa Bonchek Adams discusses metastatic breast cancer, grief and loss, life, and family on her blog.
- “Angelo Merendino: Seeing cancer, through the lens of his camera and the eyes of his beloved,” Breast Cancer Consortium.
- “Promises of Hope, Not Cure,” Pink Ribbon Blues.
- “The results of monetizing a human life,” Landis Vance, Open Salon
- “Dian Corneliussen-James: A Woman On A Mission,” Pink Ribbon Blues.
- “Enter the Komen Bandits — Racing With A Message for BC Mets,” Pink Ribbon Blues
[…] “Today is Metastatic Breast Cancer Awareness Day.” By BCC founder Gayle Sulik, Pink Ribbon Blues. […]
Awareness about metastatic breast cancer is indeed sorely lacking. As one woman mentioned in the video, many people have not even heard of the word metastatic. After all these years of breast cancer awareness efforts, how has this “word” not been part of the awareness? How is it possible that the metastatic bc community has been ignored for so long? It makes no sense to me.
This is why I have to be optimistic about this alliance. But I must admit, I’m also skeptical. Like you, I hope the alliance also addresses all those mounting concerns you mentioned. As always, you offer a steady and balanced look at things. Thank you for that.
Thank you for your comment, Nancy. Thirty years of awareness and last year was the first time a person with mets was shown in a BC advertisement. Clearly, the critiques about marginalizing this community have been heard. Whether this new alliance will foster a true collaboration and meaningful change remains to be seen. We’ll be watching. And hoping. And pressing on either way.