Though treatments and support for breast cancers have improved, more needs to be done to better serve rare subtypes and people with advanced disease.
Five years ago, Toronto resident Laura Moore, 49, found a lump in her left breast while showering. At first, she thought it was a cyst, but then it started to grow. She went to see her doctor, who ordered a mammogram, followed by a CT scan and biopsy.
Soon after, Moore was diagnosed with triple negative breast cancer (TNBC), an rare aggressive subtype of breast cancer that tests negative for estragon and progesterone receptors and excess HER2 protein. As such, it can’t be treated with drugs that target these specific hormones and protein. TNBC tends to be more common in women under 40, Black women, and women with the BRCA1 mutation.
To fight the cancer, Moore underwent a gruelling treatment regimen of chemotherapy, lumpectomy surgery, more chemotherapy, and radiation. “It was very challenging. I had multiple weeks where I couldn’t do treatment because my white cell blood count was too low to tolerate the chemo,” she says.
Aside from the physical challenges, Moore, who is Black, experienced numerous subtle incidents that made her feel excluded, such as not being told that skin reactions from treatment may appear differently in darker skin. Even at the support group meetings she sometimes felt like an outsider. “These are small but important things that have a huge impact on how you’re feeling,” says Moore.
Rethink Breast Cancer focuses on people who are underserved
These are gaps in cancer care that Rethink Breast Cancer—a non-profit that educates, supports, and advocates for people living with breast cancer—aims to close. “Our goal is to improve the unmet needs of the breast cancer community, focus on underserved groups, and do more for people who are systemically marginalized, whether it’s due to race, income, or other factors,” says MJ DeCoteau, Executive Director and Founder of Rethink Breast Cancer.
Another goal is to improve the outcomes of people with breast cancer, especially metastatic breast cancer, which means the cancer has spread to other parts of the body and raise awareness of their unique needs.
The good news is treatments and outcomes for metastatic breast cancer have improved. “While we don’t have exact clinical data on overall survival with this community, we’re seeing amazing changes with the new innovative treatments that have been introduced over the last five years,” says DeCoteau.
More needs to be done to remove barriers to accessing cancer medications
But more needs to be done. “Though many are living longer than before, when living with uncurable breast cancer, you always want to know what the next treatment will be if you need it. We need to make sure newer, more effective treatments are available to Canadians now, when people need them,” she says.
I know I’m not alone and, and I really hope that research continues to bring better treatments that also offer us better quality of life.
Rosilene Kraft of Coquitlam, BC, agrees. Diagnosed with metastatic breast cancer in 2018 at age 47, Kraft, who has a PhD in engineering, has taken a proactive role in her treatment by researching therapies and participating in clinical trials. After two previous treatments with oral therapies and milder side effects, Kraft’s cancer progressed again a few months ago and she is now on an IV chemotherapy from which she is getting a partial response. “Given its toxicity, the number of infusions I can have will be limited and I’ll have to move on to another treatment,” she says. But some of these new treatments have yet to be approved or covered under the provincial drug programs.
Hope and optimism for innovative treatments on horizon
Still Kraft tries to stay optimistic. “You do hear of cases where people have had a complete response to their next treatment and that gives you hope that you can go on being more than just stable for a number of years,” she says. “I know I’m not alone and I really hope that research continues to bring better treatments that also offer us better quality of life,” she says.
Learn more by visiting https://rethinkbreastcancer.com/