Fears can be magnified when a cancer diagnosis involves many unknowns, as is the case for triple-negative breast cancer.
A diagnosis of cancer usually engenders fear and uncertainty. These fears can be magnified when the diagnosis involves many unknowns, as is the case for triple-negative breast cancer (TNBC). “We don’t have a real name for what I have,” says Nancy Truesdale, who was diagnosed in 2008. “All we know is what it’s not. It’s like calling a redhead a non-blonde, non-brunette.”
Adding to the uncertainty of a so-called negative diagnosis is that TNBC does not respond to some of the most effective breast cancer treatments, such as Herceptin (trastuzumab) and tamoxifen. “It’s extremely difficult to learn that all of the progress we have made in treating breast cancer doesn’t apply to you,” says Truesdale.
Sabrina Flath, 46, says when she put all her test results together she realized she was triple-negative. “I had an overwhelming feeling of not winning the lottery on this draw,” recalls Flath of her 2007 diagnosis.
Both Flath and Truesdale coped with the unknowns by educating themselves about their diagnosis. Flath remained positive despite what she refers to as a “mind-boggling information overload” about TNBC. “I felt I had a pretty good grasp of what triple-negative meant and what my challenges would be,” she says. “But I never felt that my diagnosis was a death sentence.”
Oncologist Mark Pegram, MD, of Sylvester Comprehensive Cancer Center in Miami, also focuses on the positive, stressing the recent progress in moving TNBC out of the realm of the unknown. “There’s a race on to hunt for new [drug] targets in this population,” he says. “And as soon as that happens, we’ll stop calling it triple-negative and start calling it something positive.” Even in the absence of newer drugs today, chemotherapy is effective in lowering the risk of recurrence for early-stage TNBC.
In the meantime, patients don’t have to stand on the sidelines waiting for better drugs to emerge. Truesdale and Flath both took an active role by participating in clinical trials of Avastin (bevacizumab), which seems to work in TNBC. (Avastin is already approved to treat HER2-negative breast cancer.) Flath is now enrolled in a phase II trial of bisphosphonate drugs to help prevent cancer from spreading to the bones, and she suggests that others do the same. “Make a difference to others by joining a clinical trial if you’re eligible,” she urges. “Who knows, you might just be making a difference for yourself too.”
TNBC patients can also draw on the support of others who share the diagnosis to relieve what Truesdale calls the “isolation of not being a part of the majority.” Truesdale and Flath have shared their experiences and advice with others through organizations such as the Triple Negative Breast Cancer Foundation (www.tnbcfoundation.org), which was founded in 2005, and suggest newly diagnosed patients also take advantage of the information, support, and camaraderie the organization provides.
Editor's note: In Nov. 2011, the FDA revoked the approval of Avastin for advanced breast cancer due to follow-up studies not showing a survival benefit or improved quality of life.