Living with a terminal cancer that is seldom understood
Chicagoan Shannon Collins was in for a shock. At age 26, she was diagnosed with triple-negative breast cancer, a surprising diagnosis for one so young, even though breast cancer runs in her family. Taking an all-out approach, Collins tackled the cancer with aggressive chemo and a double mastectomy.
As grueling as the treatment was, she put it behind her. Her doctors said she was in the clear. But less than two years later, in April 2017, the cancer came roaring back, this time as metastatic breast cancer (MBC) that had spread to her lymph nodes and bones.
MBC — also called stage 4 breast cancer — is the most serious form of the disease and occurs when the cancer has spread to other parts of the body. It can be treated but not cured. The five-year survival rate is 27 percent, according to the National Cancer Institute, though some women live 10 or 20 years beyond diagnosis.
Because people are more familiar with early-stage breast cancer, Collins says, it’s tough to educate them about MBC, which is treated differently. She has to tell friends that even though she looks good, she’s sick inside and doesn’t always have the energy to go out. She tells them she’ll always be in treatment, taking an oral medication to try to keep cancer progression at bay.
“One hard thing is just having to explain what metastatic breast cancer is and why I don’t look sick. They ask: ‘Why are you not doing aggressive chemo?’ ‘When are you done with treatment?’ They can’t wrap their head around the fact that I’m never going to be done with treatment.”
About 155,000 individuals in the U.S. are living with MBC, and 13 percent of them are under age 50. Premenopausal breast cancer tends to be more aggressive than postmenopausal breast cancer. And younger women face a unique set of issues, including premature menopause, emotional isolation and the disease’s impact on work and family.
“Having [MBC] at a young age, I feel like I do have more energy,” Collins says. “I am more healthy than a lot of the women who are in their 50s, 60s and 70s. But they’ve also been able to live longer and have a lot more experiences than I’ve been able to so far.”
Collins is refocusing her priorities. When she received the diagnosis of MBC, she and her fiancé Kevin moved up their wedding date to May 2017 to have the big wedding they’d dreamed of — with 422 guests — while she still had energy. She and Kevin recently bought a house in Bridgeport. And they spent February vacationing in Turks and Caicos, escaping the cold Chicago winter.
Now 30, Collins is still working part-time but trying to ease up when possible. In the meantime, yoga, naps and support groups help her get through. As treatment improves, more women are having a better quality of life with MBC. And Collins plans to be one of them.
Learn about a treatment approved for younger women with MBC at MBCKnowsNoAge.com