Guest Post by Katherine O’Brien

“I am a mother, a wife, a business owner, an artist, and a lover of all that lives,” is how Beth Fairchild of New Bern, NC describes herself on her Twitter page (@bethfairchildnc). “I also have advanced stage breast cancer.”

Beth 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 inundate 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. I was impressed with Beth’s poise and obvious preparation—she clearly had done her homework. I was also struck by Beth’s ability to look beyond her own situation—she is young but I didn’t hear pity in her voice. I heard someone speaking for others—for all people with this disease.

As I consider Project Hashtag, I have asked myself what I would like people to know about metastatic breast cancer.

First, I want people to know that the median age for breast cancer in the US is 61. I want people to ask why Beth—a woman in her 30s—is dealing with a disease of aging. Note that early detection would not have helped Beth—most women with no family history would not get a mammogram until they are 40-50 years old. 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.

Johnson’s study didn’t evaluate cause. We need researchers to examine potential causes for this trend and look at etiologies.

Second, I want people to know that all cancer research is underfunded. When adjusted for inflation, the NIH budget is nearly 25 percent below its 2003 level. “ASCO is deeply concerned about continued stagnation of federal research funding,” ASCO immediate-past President Clifford A. Hudis, MD, FACP said. “All types of high-quality cancer research projects are at risk of being slowed, halted or simply not pursued. In addition to the challenges this presents to basic and translational research, NCI recently announced plans to cut the overall patient enrollment target for cancer clinical trials by 15 percent, after having already scaled back and consolidated its National Clinical Trials Network.”

USA Today’s Robert Bianco recently interviewed Siddhartha “Emperor of All Maladies” Mukherjee:

“Mukherjee decries the budget cuts that have afflicted scientific research,” Bianco wrote. “And if you think we already devote a lot of money to the NIH, the CDC and other government research outlets, Mukherjee says their combined budgets don’t equal the money we spent on air-conditioning for the Gulf War.”

Third, I want people to know the frustration and yes, the anger that arises when change isn’t happening soon enough. When I was 17, my mom died from inflammatory metastatic breast cancer. Inflammatory breast cancer is a rare presentation—there is no lump—and it is almost found at an advanced stage. My mom lived with it for about two years—she was 53 when she died.

I was diagnosed with metastatic breast cancer at age 43. Genetic testing showed I am not a carrier for currently known mutations (BRCA-1 or BRCA-2). I am angry that I have no answers for myself, my sister or my nieces—even after three decades. Beth is about 22 years younger than my mom was at her diagnosis and she has a young daughter. How must she feel?

As an advocate, you have to set that anger aside. You have to educate yourself, you have to collaborate with others and you have to realize progress can be agonizingly slow. But most of all you have to keep going—even when you are feeling defeated. It’s not easy.

Fourth, I want people to reconsider what they think they know about breast cancer. For years, I thought I was well-informed about breast cancer—after all, my mom had died from it. I had firsthand experience. After my own diagnosis, I found out that I really didn’t know anything. Unless you have metastatic breast cancer, you probably don’t think about it much—why would you? But if people will take the time to read just one very short article they will be that much closer to greater understanding and hopefully greater action.

Fifth, I want people to know there’s so much to do—more than we can accomplish in just one day. Note that Tuesday is 3.3.15—Triple Negative Breast Cancer Day. TNBC tends to be more aggressive, more likely to recur, and more difficult to treat because there is no targeted treatment. Learn more about triple-negative MBC here.. Every Monday is #MetsMonday. Let’s keep the conversation going!

Additional Links:
Metastatic Breast Cancer Network: What’s Happening on Twitter and Beyond
Young Women with Metastatic Breast Cancer Launch Twitter Protest

3/2/15 Tweet Chat Transcript

Katherine O’Brien

Katherine O’Brien was diagnosed with metastatic breast cancer in 2009. After more than two decades of editing trade magazines she is now a full-time patient advocate. Katherine is a board member of the Metastatic Breast Cancer Network. She blogs at IHateBreastCancer. Follow her on twitter: @ihatebreastcanc.