Note to Breast Cancer Researchers

Quit terrifying women with your words and your deadly pronouncements.

Posted Jun 05, 2018

Patricia Prijatel
Source: Patricia Prijatel

Today, I saw it again—that well-meaning quote from a breast cancer researcher that will terrify the women he is trying to help.

“There is no treatment for triple-negative breast cancer,” said a scientist whose research uncovered a way in which our immune system can either help or hinder our response to the disease. The link I provided above connects to my report on his research. I edited out his comment, because I know that readers will focus on that “no treatment” comment and not focus on the “new treatment" reality.

About a quarter of all breast cancers are some form of triple-negative. TNBC is unique in that it is not fueled by hormones, like the more common form, estrogen-positive. This makes it unresponsive to typical breast cancer drugs such as Arimidex or Tamoxifen, which target hormones, primarily estrogen. Nor does it respond to drugs to treat her2-negative breast cancer, such as Herceptin.

But, it does respond to chemo. In fact, chemotherapy is far more effective in treating TNBC than in treating estrogen-positive disease. And the vast majority of women with TNBC survive and go on to have more children, run marathons, write books, learn to surf, travel, hike, read, and be wonderful moms, sisters, daughters, wives, and friends.

By contrast, a recent study demonstrated that most women with estrogen-positive cancer, get no benefit from chemo.

So this scientist’s research is good news. Perhaps great news. Immunotherapy may be the future of treatment for TNBC, and his research shows how to make it more effective, and how to target the women who need it the most. I thank him in the name of all the women who might benefit.

But why make it sound like there is no existing treatment now? That nothing works? Because that is how some women will read it. I know. I am one of those women and I have worked with thousands of others as an advocate for those affected by TNBC and as an author of a book on the disease.

We're told this disease is highly aggressive and deadly and a triple-threat and overall seriously bad news. Until we put it into perspective—most women survive and there is treatment—we're going to continue to have women whose energies are going far too much into worry and far too little into taking care of themselves.

One reason the scientist made the comment he did, I think, is because it makes his research more significant. He can get important funding from his institution and from an increasingly stingy government  to continue his research. I get this, and I want his research to continue. Another reason is that his statement is true for a small subset of women with TNBC—those who have metastatic disease. At present, there is no targeted treatment for this form of the disease, and research on immunotherapy is an essential step in getting us where we need to go.

But words matter. Details matter. Researchers could just say there is no treatment beyond chemotherapy, and that chemotherapy works for most patients. Those facts are an important dose of hope for women who are looking for information—and some good news—on a disease they fear will kill them. It does not kill most women, and researchers should take the time to make that point.

Why terrify people if you don't have to? Well, why terrify them ever, no matter what?

READ MORE ABOUT TRIPLE-NEGATIVE BREAST CANCER:

Who Is Most Likely to Get Triple-Negative Breast Cancer? Blacks, Hispanics, younger women face largest risk.