Beth Fairchild was diagnosed with metastatic breast cancer in her early 30s. She got together with several online friends — all about her age and all living with Stage IV breast cancer. They launched a website and on Monday, March 2, they plan to flood social media outlets with MBC information and hashtags such as #MetsMonday and #DontIgnoreStageIV. (Blogger Nancy Stordahl is credited with the ongoing #MetsMonday hashtag.)
Their goal with Project Hashtag as they have dubbed it, is to get MBC trending on Twitter and beyond.
Beth Fairchild’s determination to get the message out about metastatic breast cancer practically jumps off the screen — whether it is on Facebook, Twitter or this February 27, 2015 television interview.We were impressed with Beth’s poise and obvious preparation — she clearly had done her homework—she told viewers no one dies of early stage breast cancer—when cancer spreads beyond the breast to a vital organ that is was kills people. Most people treated for early stage breast cancer won’t have a metastatic recurrence—but unfortunately about 30% will—and there is no cure for metastatic breast cancer in 2015. Finally, Beth decried the woefully underfunded state of metastatic breast cancer research.
Early detection would not have helped Beth — most women with no family history would not get a mammogram until they are 50 years old. The median age for a US woman with breast cancer is 61. Cancer is supposed to be a disease of aging.
The answer is not to give 30-year-old women mammograms. It is to determine the scope of the problem.
Rebecca H. Johnson, MD, of Seattle (Washington) Children’s Hospital and the University of Washington in Seattle, noticed that evidence from the National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database suggested that incidence of metastatic breast cancer in young women is on the rise. Johnson and her fellow researchers released a study that found “a small but statistically significant increase” in metastatic breast cancer over the last three decades among U.S. women aged 25 to 39 years.
During the past 30 years, more women ages 25 to 39 were diagnosed with metastatic breast cancer — from 1.53 cases per 100,000 women in 1976 to 2.90 cases per 100,000 in 2009. This means that about 800 women younger than 40 are diagnosed with metastatic breast cancer each year now, compared to about 250 per year in 1976. While the increase is relatively small, it’s very troubling.
“Changing the Landscape for People Living With Metastatic Breast Cancer” was published in 2014—the first output from a newly formed alliance of 29 cancer organizations. (MBCN Is a co-founder of the Metastatic Breast Cancer Alliance.) In a nutshell, according to the report’s authors, there’s a lack of awareness about metastatic breast cancer and how it differs from early stage breast cancer, too little research funding, and lack of accurate statistics on incidence, prevalence and survival as well as limited information and support services for those living with the disease.
We have written at length about how the US cancer registry doesn’t accurately track women with breast cancer as well as the dismal US federal funding for ALL cancer research—we won’t rehash that discussion here.
We can’t tell the entire metastatic breast cancer story in one day or one blog post. We know we need more research for Stage IV breast cancer. What can we tell people beyond that?
We were particularly taken with one question the Metastatic Breast Cancer Alliance raised in its Landscape Analysis: What gaps or roadblocks exist that hinder advances in MBC research?
>MBC research has been underfunded (approximately <5% of breast cancer funding).
>Overall cancer research is also underfunded (0.1% of the Federal budget.) Other areas receive more funding including the military, farm subsidies and education.
Matched Tissue Samples
>To advance MBC research, better access to tissue is needed, including the primary tumor and interval blood samples collected and banked between the primary and development of the recurrent metastatic tumor.
MBC tissue from different populations needs to be studied (e.g., MBC in younger, premenopausal women vs. MBC in older women).
>The previously available laboratory models for MBC research were discouraging but in 2013 and 2014, several laboratories have demonstrated interesting MBC models.
MBC models need to be validated an standardized across laboratories.
Academic-Initiated Clinical Trials
>Academics have not focused enough on MBC (in basic research, clinical trials or cooperative groups), although focus is rapidly shifting to MBC as a priority
>MBC research is complicated, costly and time consuming (e.g., early breast cancer studies in animals can be two or three months; MBC animal studies can take up to 9 months to run a single set of animal experiments).
>Lack of academic involvement has resulted in MBC trials being led by the pharmaceutical industry and business interests, including correlative science studies.
>We need to better understand the epidemiology of MBC. How many patients have a recurrence? What are their treatments and responses? How long do they survive?
There’s so much to do — and we have shared only a tiny glimpse at the hurdles facing those trying to make a difference in metastatic breast cancer outcomes.
Every Monday is #MetsMonday. Let’s keep the conversation going!
Thank you for speaking up for all those of us who are waiting for the other shoe to drop.
Thank you for getting the message out there. Far too many women dying of this disease and far too few advancements in treatment options. This is important.
[…] Links: Metastatic Breast Cancer Network: What’s Happening on Twitter and Beyond Young Women with Metastatic Breast Cancer Launch Twitter […]
I was recently diagnosed at 47 with triple negative, BRAC negative, stage 4 MBC and I was shocked. I am a mom, a wife, an RN and will be graduating with my PMHPNP in May. I find it utterly discouraging to sift through the little research, medications and trials that I have found on this cancer. I want to help get out the word. People think breast cancer is curable. I did all the right things. I exercised, ate healthy, had a normal weight, breasted my children for a total of 4.5 years but I was not immune.
I have found some promising research on exercise, attitude and diet but more research needs to be done. There is scant research on medications, side effects, and statistics. I do not feel like I have many medication options except for trials and I for one am ineligible for many studies due to being stage 4. It’s a catch 22. The possibility of my imminent death makes makes me a poor research subject as drug companies want to show good outcomes. I guess dying during a research study would not be a good outcome.
We need more research and more funding for research in this area.
Reblogged this on thebreastlife and commented:
Get informed. Spread the word. #dontignorestageIV