Dying for a cure this Pinktober: Metastatic Breast Cancer Awareness

Pink parties. Pink Ribbons.  Pink celebrations. Pink boas.  Pink bagels.  You name it, it’s pink in October.  Many people, breast cancer patients and others, find empowerment and emotional comfort in “pink.” Many feel as if they have done good by participating or buying a “pink” good. As I’ve mentioned before in my post, Missed Opportunities: Celebrities are not doctors,  I think it is important to respect and acknowledge that everyone finds empowerment through different avenues. Pink is not evil, although it has been grossly contorted by commercial organizations. Today I want to highlight a group of people who do not find comfort in pink: women and men living with metastatic breast cancer. In fact, these women and men feel marginalized, left out of the breast cancer conversation and hurt by pink.  These are the stories you don’t hear during breast cancer awareness month.  There are no pink boas and glitter.  There are heart wrenching stories and people working together tirelessly for a real change for breast cancer research. If you take a chance to really get to know the stories of metastatic breast cancer, (stage IV breast cancer), your eyes will be opened. I know mine were. The first time I watched this video below, I was shocked.  It took my breath away.

I am concerned and discouraged by “breast cancer awareness” campaigns like “No Bra Day,” that serve no purpose other than to sexualize breast cancer, to focus only on the breast and not the LIVES that breast cancer impacts, and to diminish the importance of today, October 13th, Metastatic Breast Cancer Awareness Day.  Here’s the hallmark media piece for No Bra Day:

nobraday

This campaign and it’s marketing collateral show a complete lack of understanding and empathy for a patient’s journey through breast cancer and a mastectomy.  It’s gross.

Metastatic breast cancer is breast cancer that has spread beyond the breast to other parts of the body.  Often this includes the brain, bones and lung.  Metastatic disease has no cure. It’s painful.  It steals women and men from their families.  It cares nothing of age, race or gender. It has no cure. Patients will live the remainder of their lives undergoing treatment.  There’s nothing sexy, pretty or celebratory for patients with metastatic disease.  Go ahead and tell a metastatic breast cancer patient, or any cancer patient, they “got the good cancer.”  See what kind of response you get.

The reality is that over 100 patients die, every day, in the United States from metastatic breast cancer.  The reality is that roughly 30% of breast cancer patients, regardless of stage at diagnosis, will develop metastatic disease.  The reality is that only 2% of breast cancer research dollars go to fund the deadliest type of breast cancer when one third of breast cancer patients will die from metastatic breast cancer.

The metastatic breast cancer community deserves better.  They deserve our support.  They deserve better and more research funding. They deserve to be at the forefront of the conversation, because metastatic breast cancer is what kills women and men with breast cancer. 30% is not a small proportion.  30% of all breast cancer patients are estimated to develop metastatic disease.  (Why do I say estimated?  You may be surprised to know that the SEER database does not track when a patient’s disease progresses from early stage to metastatic. I found this interesting blog post with a response from NCI on why it is not tracked. The gist: lack of financial resources and complexity of tracking.)

dyingforacure

Rather than focus on what’s negative, however, I want to highlight some of the good.  Today, MetUp.org is hosting a “die-in” in Washington, D.C. to highlight the tragic state of breast cancer research for metastatic breast cancer.  All over the country, people are taking a stand, and highlighting the real, ugly truth about metastatic breast cancer: it kills. To follow the die-in and learn more from patients, families, healthcare providers and caregivers affected by metastatic breast cancer, please follow the hashtag #pinktoblack.  If you’re not motivated to spur change after reading through the tweets, I’ll be surprised.

So let’s stop with the campaigns like No Bra Day and Save the tatas.  Women and men diagnosed with breast cancer are people with lives.  People with families, people with aspirations, people who are “dying for a cure.” Let’s make a difference.  Support organizations like METAvivor and MetUp that are starting to make the real uncomfortable conversation heard.

#pinktoblack metup.org metavivor breast cancer awareness #bcam

Want to learn more?  Here are some great metastatic breast cancer resources:

  1. METAVivor: “METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of stage 4 cancer research.  While more and more people have taken up the cry for more stage IV research, METAvivor remains the sole US organization dedicated to awarding annual stage IV breast cancer research.”
  2. MetUp: “METUP is a diverse, non-partisan group committed to direct action for a viable cure for breast cancer. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.”
  3. Metatstic Breast Cancer Network: “MBCN seeks to: EDUCATE patients about metastatic breast cancer treatments and how to cope with the disease; Educate the public about the differences between early and advanced stage disease. EMPOWER patients to use their story and voice to bring attention to the needs of metastatic breast cancer patients and to use their knowledge to participate more fully with their healthcare provider. ADVOCATE for focused research to find more targeted therapies to lengthen the lives of patients and make metastatic breast cancer truly a chronic disease like diabetes or HIV/AIDS.
  4. National Comprehensive Cancer Network Stage IV Breast Cancer Patient Guide: NCCN is a not for profit alliance of 25 of the world’s leading cancer centers, and provides what are considered the gold standard for cancer treatment.  This e-book is written specifically for patients diagnosed with metastatic breast cancer in patient friendly terms.
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