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As National Previvor Day approaches, I’m getting back on my soapbox to discuss genetic testing and family histories of cancer. After all, these discussions could save lives.
I’m going to climb on top of my Hereditary Cancer Prevention Soapbox again to express some anger and frustration with the hope it will make a difference. With National Hereditary Cancer Week and National Previvor Day coming up at the end of the month, I thought it was the perfect time.
Lately I have been hearing far too many stories of individuals diagnosed with cancer that turned out to be hereditary. But it really shouldn’t have been a surprise. In every case, there were blood relatives who either survived cancer or succumbed to it. It makes you wonder how many of these cancers could have been prevented or at least caught early if family health history had been taken more seriously by the families and, more importantly, their health care providers.
A family friend might turn out to be a perfect example of what I’m talking about. (I’m trying to protect his privacy here so I’m being a little vague.) An aunt and one of his parents died of cancer, and over the past several years, he had to have several pre-cancerous lesions removed.
After my wife was diagnosed with hereditary cancer, I began urging him to get genetic testing for his children’s sake. Frustratingly, he kept dragging his feet despite my nagging. But I can’t place the blame entirely on him. When he asked his primary care physician about it, unbelievably, the doctor actually discouraged him from getting tested! The anger I felt was palpable when my friend told me this.
However, I was determined to avoid a potential tragedy, so I kept nagging and finally convinced my friend to go talk to a genetic counselor directly. After hearing his and his family’s medical history, the genetic counselor immediately referred him for testing. In fact, the counselor even suggested a more extensive test to be sure all possible mutations would be tested for. He is now waiting for the results.
I have also recently heard stories of several other individuals who are either ignoring or outright refusing to get tested for possible genetic mutations that may put them at risk for cancer. When I hear these stories, I get angry and immediately think of all the cancer patients I read about here on CURE® who would have done almost anything for the chance to prevent their cancer!
Maybe because I was a cancer caregiver and witnessed first-hand the almost unbearable suffering, heartache and trauma that cancer can cause, the outright refusal to talk to a genetic counselor or to get tested for a possible cancer risk seems insane to me. Yet, I frequently hear stories of denial and sometimes outright anger at being informed of the family’s mutation and cancer risk.
What causes this reaction? I don’t know or understand it. A psychologist might have the answer. I can only guess it’s fear. Cancer is frightening, and fear can make you react in unpredictable, sometimes inexplicably stupid ways.
I think of my wife’s family and their devastating family history of cancer and how it was never openly talked about in her family. And how gene sequencing information was not shared in a timely and appropriate manner by those who possessed it, even though the report (which was shared after my wife’s diagnosis) clearly states the potential for other family members to also carry the mutation. Besides communication issues, does cancer anxiety cause reading comprehension issues too?
But then again, why is the sharing of potentially life-saving information even entrusted to medically illiterate individuals? Health care privacy laws need to evolve as hereditary cancer knowledge expands. (But that can be the subject of a future blog.)
In the book, “A Cancer in the Family,” by Dr. Theodora Ross, a BRCA1 mutation carrier herself, it states: “It takes courage to look at a family history of cancer. A major reason people fail to assess their genetic inheritance is that it’s hard for them to see the upside — to imagine life can be better, not worse, if they discover they’re at increased risk of cancer.”
Imagine life can be better? I know my life would have been better if I had not lost my beloved wife of 40 years to a very preventable hereditary cancer. And it goes without saying that life would have definitely been better for our daughter to still have her sweet mother alive.
But without a doubt, both my daughter and I clearly see the upside of knowing about a germline mutation. Unfortunately, my daughter inherited the same BRCA2 mutation from her late mother. However, the upside is that my 29-year-old daughter has been able to take preventative action so she will have an excellent chance at a full life cancer free.
National Previvor Day is Sept 28. My daughter is a courageous previvor, but her mother should also be one. We are not sure whether to celebrate or curse the day.
"I will prevent disease whenever I can, for prevention is preferable to cure."
-- From the Hippocratic Oath
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