Hayley Dinerman
Co-Founder and Executive Director, Triple Negative Breast Cancer Foundation
When my friend Nancy Block-Zenna was diagnosed with triple negative breast cancer (TNBC) in 2005, her family and friends struggled to find credible information about the disease. At the time, little was known about TNBC and support services for the thousands of families faced with this diagnosis was scarce. Most people were completely unaware that not all breast cancers were the same, and that certain subtypes of the disease were far more difficult to treat.
Today, things are different. There is a much better understanding of TNBC, improved treatment options, and tremendous support for the TNBC community.
Understanding triple negative breast cancer
The various types of breast cancer are generally diagnosed based on the presence or absence of three “receptors” known to fuel most breast cancer tumors: estrogen, progesterone, and HER2. A diagnosis of TNBC means that the tumor in question does not exhibit any of these three receptors. Since most advances in the fight against breast cancer involve receptor-targeting therapies, those with triple negative tumors are at a disadvantage.
That said, chemotherapy can be highly effective in early stage TNBC, and significant progress has been made over the past decade in the metastatic setting as well. PARP inhibitors, immunotherapy, and antibody-drug conjugates have changed the treatment landscape, and researchers are actively investigating potential new therapies. Ongoing clinical trials are looking into reducing the risk of recurrence, particularly for those patients who have not had a complete response to their initial treatment.
“It’s exciting to see the FDA approvals that have come in over the last few years which have led to dramatic changes in how we treat metastatic TNBC,” said Dr. Rita Nanda, Associate Professor of Medicine and Director of Breast Oncology at the University of Chicago.
Self-advocacy during the pandemic
While treatment of TNBC has advanced over the years, it’s as important as ever to take an active role in your healthcare decisions. This begins with being proactive and checking your breasts regularly. When something doesn’t feel right, seek out medical help as soon as possible. And in the event of a TNBC diagnosis, know your options. Being comfortable with your medical team and confident in their knowledge of treating TNBC is crucial.
While the pandemic has created many challenges in the healthcare world, increased use of telemedicine has also provided new opportunities to access experts. Second opinions are now easy to obtain. For patients who live in rural areas or for those with transportation issues, virtual medical appointments are a game changer. Now, no matter where you are being treated, you can have your data reviewed by TNBC experts in a leading academic center. There are also many educational resources available online through the Triple Negative Breast Cancer Foundation (www.tnbcfoundation.org) and other advocacy groups. These resources, from taped teleconferences to printed resources, can help educate you about your diagnosis and make you feel more confident about your treatment choices.
Connecting with family and peers during COVID-19
Another positive consequence of the pandemic is the widespread use of zoom, which allows people to access a virtual community. The Triple Negative Breast Cancer Foundation offers virtual monthly meetups through zoom, where TNBC thrivers from all over the United States and even abroad join to share information and to support one another. Many long-term TNBC thrivers participate, offering guidance and hope to newly diagnosed members.