(BPT) – Beth Fairchild considered herself fairly well-educated about breast cancer. Like most people, she had followed discussion in the media, the pink merchandise and the many events in support of breast cancer awareness, as well as the accompanying information about prevention and early detection. But for Fairchild, the disease was also personal: both her mother and paternal grandmother had been diagnosed with breast cancer, which she knew increased her own risk. Because of this, she educated herself and followed recommended steps to monitor her health.
But when Fairchild, 36, a tattoo artist, wife, and mother of two teenagers, first noticed pain and swelling in her pelvic area two years ago, breast cancer never entered her mind. Over the following months, her pain increased, and she developed nausea and fatigue. She was shocked when exams, scans and surgery led to a diagnosis of metastatic breast cancer (MBC) -- breast cancer that had spread to other organs.
In MBC, the cancer spreads (or "metastasizes") beyond the breast to other organs in the body -- commonly the bones, liver, lungs and brain. While 98 percent of women whose cancer stays confined to the breast are alive at five years after diagnosis, only about 25 percent of women with metastatic disease live five years or longer. There is no cure for MBC, but treatments are available that can shrink tumors, delay their growth, and in some cases, help patients live longer.
"At diagnosis I was told I probably had about two years to live, which is really devastating to hear," Fairchild says. "I had so many questions; I thought I knew everything a woman needed to know about breast cancer, but I realized that I just didn't know anything. I needed to educate myself -- quickly!"
Fairchild turned to the internet, learning about her disease by spending up to 12 hours a day pouring over research studies and struggling to digest complex and confusing medical information. "While there is information available, it can be overwhelming to sift through, especially during the emotional time following a new diagnosis," she says. "I was frustrated that so much of the available information I found did not adequately address metastatic breast cancer."
Today, women with MBC and their loved ones may have an easier time finding the information they need, as more resources have been created specific to metastatic cancer. MBCInfoCenter.com is a website dedicated to providing comprehensive resources for MBC. The site, created by Eisai Inc., aggregates credible online resources on many topics, including understanding side effects and pain management, tips for living healthier lifestyles, and a patient-friendly guide to understanding clinical trials. It also guides MBC patients to communities where they can share information and experiences with others.
For Fairchild, her time online led her to stories of other women with similar diagnoses, which offered her comfort and encouragement. "I started to learn about people who had been living with this disease for three, five, 10 and even 13 years. That's what I needed -- to know that it would be possible for me to live with this disease."
It has now been two years since Fairchild's initial diagnosis. "Working closely with my doctors, I was able to get on a treatment plan that is working for me," says Fairchild, who has also become a passionate advocate for increasing awareness of MBC and helping others with the disease. She is now vice president for METAvivor, an organization dedicated to funding research, providing support and awareness of the disease for those women and men living with stage 4 metastatic breast cancer.
"Public perception of breast cancer is that it's treatable when caught early, but what's concerning for me is the lack of public understanding about what happens if it spreads beyond the breast," she says. "I'm glad there are more resources today for people to learn about MBC, but there is still work to be done," she says. "One major obstacle is lack of funding for metastatic research -- only about 2 percent of the funds raised for breast cancer research is spent studying metastases that have already occurred. Raising awareness and public understanding are the first steps to increasing funding and ultimately improving treatment of MBC."
Today, Fairchild uses her online platforms to connect with others and elevate the profile of the disease. She has made it her personal mission to increase understanding about metastatic breast cancer, not just among patients but also among the general public. As part of her efforts, she is working with METAvivor and Eisai on the #ThisIsMBC public education campaign, designed to improve public awareness, understanding and acceptance of metastatic breast cancer. The campaign encourages those living with MBC and the friends and loved ones who care for them to share their experiences on social media, using the hashtag #ThisIsMBC.
"While public awareness about breast cancer is improving, I want to leave a legacy by helping to raise the profile of MBC. If I can help one other person better understand the disease and get help, I will have done my part," she says.
To learn more about METAvivor, visit the METAvivor.org or follow them on Facebook, Twitter or Instagram. To learn more about Beth and her story, follow her on Facebook, Twitter or Instagram. For more information about metastatic breast cancer, visit MBCInfoCenter.com.
This content is provided by Eisai Inc.
* Stage IV breast cancer is responsible for virtually all breast-cancer deaths, and yet, while we practically drown in pink ribbons and breast-cancer awareness year after year, 61% of Americans say they know little to nothing about metastatic breast cancer, according to a recent survey.
All month long this October, Refinery29, in partnership with #Cancerland, has been bringing you these women’s stories, in an effort to change the conversation about breast cancer. We’ve talked about how only about 2% of the money raised for breast cancer research goes toward metastatic disease, and we followed stage-IV activists to D.C. as they lobbied congress to change that. But as October comes to an end, we want to turn to the daily, lived experiences of these women: What is it really like to live with a disease that everyone seems to have heard of, but no one really understands?
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