My Mother, My Daughters, and Breast Cancer

Genes cause cancer. But genes do not necessarily cause death from cancer.

Breast Cancer Awareness Month is a time of both hope and remembrance for me. Hope for a better future, and remembrance for my Mother. She died suddenly of metastatic breast cancer at about the time I was going to deliver my second baby daughter. It didn’t have to be that way. Losing my Mom to breast cancer haunted me for a long time, and as my writer and reader friends know, I write about that and other real-life horrors.

We make up horrors to help us cope with the real ones.

Stephen King

Breast Cancer and Survival

When my Mom found out she had breast cancer, I was already trained as a geneticist. But at that time we didn’t have predictive tools like gene testing. Now, access to a simple test for BRCA DNA and many other genes can make a world of difference for a person’s prevention of, or survival from cancer. For some women, genetic testing shows the best ways to prevent cancer in her future, or to treat her cancer earlier, or to use prescribed drugs that are most likely to work best for her – all things that can lead to a longer life.

But it isn’t really all in the genes, because the medical care a person with cancer gets, or doesn’t get, and the place she lives, and the socioeconomic or racial biases of her clinical caretakers – all can change her chances of survival. A cancer patient’s survival is sometimes shorter in rural areas than urban, for community sites than cancer center sites, for places of poverty than wealthy areas, but especially for women who are Black and African American, than for others.  For my Mom, who was a white woman, lived in a rural area, was treated at a local community site in a poverty-stricken area of the Catskills in NY, chances were not the best.

When we die early –  before reaching our 65th birthday – we most often died of cancer where I lived as a kid, in the Catskills, and where I live now, in NYC. Many families lose loved ones too soon from cancer. My mother’s breast cancer had spread from there, where she had no signs or symptoms, to her liver and beyond by the time she was diagnosed. In her liver, it grew and swelled undetected, until doing her daily physical exercises got difficult. Then she went to get checked out – she was 57. She died a few short months later from metastatic breast cancer.

Of course it didn’t have to be that way. Healthcare providers sometimes refer women for a yearly mammogram that can find breast cancer early. Finding a small cancer early on is easier to treat – right there where it is, before it spreads to other vital organs, like the liver. Some clinicians refer women for even newer and better screening tests now, like 3D mammograms and sonograms and scans that can be better than mammograms at finding cancer early. 

And of course, now, more intense cancer prevention is available by looking at our genes, and our family genes, with genetic testing. 

Why Doesn’t Everyone Get Genetic Testing for Breast Cancer?

To be lucky enough to get genetic testing, a person has to be referred by a healthcare provider, a clinician – and have the right kind of health insurance coverage, or have enough funds available to pay for gene tests. Maybe most importantly, she has to know that gene testing exists and can save lives.

Some of us don’t get genetic testing because we don’t at all want to know if we are at high risk for cancer or another disease. For me, I usually think life is short, I get the most happiness I can out of it, which means not thinking about getting cancer any more than I absolutely have to (like every time I think of either of my parents, who both died of cancer). But denial or fear is not ever the whole thing. 

Might I have cared about getting genetic testing if a healthcare provider or clinician brought it up with me at a medical visit, despite my unspoken personal fears and denials? If a doctor referred me for genetic testing, would I not have gone? I don’t know – but I almost always go when I am referred for something. Every clinician I have ever seen knows my mom died of breast cancer and my dad died of lung cancer, because I always bring it up at a medical visit. For 62 years, zilch, nada. No gene tests for me. I should have asked, of course, and I am working on the strength to do that one day.

The big question for me is: Will my daughters get genetic testing?

I don’t know. But that is where I have hope for the future. 

Maybe they will.