For the 155,000 women in the United States living with this diagnosis, each day represents a constant fight against a cancer that has spread into other parts of their bodies — most often their bones, liver, lungs or brain. With metastatic breast cancer, you must be scanned every three months and you never know whether the cancer will remain stable or spread at any time.
While there remains no cure for metastatic breast cancer, it is important to research new and better treatments.
When Ginny Knackmuhs got the sobering diagnosis she felt overwhelmed. She knew the average life expectancy was just three years.
Facing an unknown future and trying to sort through the best treatment options it was all too difficult to process.
“You are confronting your own mortality and feelings of guilt, denial, anger, and depression are not uncommon,” she said.
Ginny retired from IT work and started volunteering with the Metastatic Breast Cancer Network, a nonprofit patient advocacy group.
Ginny signed up to be part of 23andMe and Genentech’s joint InVite Study, to learn more about how a person’s genetics could play a role in how they response to bevacizumab (also known as Avastin®). The drug is not approved by the FDA for treatment of breast cancer.
“I’d like to help further research in that direction — to determine who benefits from Avastin,” she said.
She believes being able to understand how drugs have affected or not affected her and others’ cancer could help other women, especially those patients, like her, who have aggressive forms of breast cancer such as triple-negative.
Beyond that she has a message for others with metastatic breast cancer.
“I would tell newly diagnosed women to take a deep breath, talk to their oncologist, get a second opinion, preferably at a major cancer center and know that you don’t have to rush to a decision in the first week,” she said. “You need to be comfortable and confident in your oncologist and treatment team.”
Ginny’s battle isn’t over. Her tumor markers have slowly risen over the last year, so it is possible that she will have to change her treatment regime.
“I have also reached out to the Metastatic Breast Cancer Network and received a lot of support and education, so that I can advocate for myself and understand the treatment options and best ways to cope with my disease.”