Having Your Cancer Story Validated Through an Unconnected Event

I had just signed on to my computer and the first thing that popped up was a post by a fellow hereditary cancer advocate about Today Show contributor Jill Martin having breast cancer caused by a BRCA2 mutation. Followed by another post about it, then another, then another. And about the same time, text messages started coming in telling me about the story.

“Wow,” I thought, “sad, but she’s saying things about her hereditary cancer diagnosis I have already said numerous times.” I’ve written about it here at CURE® often, posted about it on my personal blog and on social media. I’ve ranted about it to friends and acquaintances and even during part of my eulogy at my beloved wife’s celebration of life in front of a couple hundred people. But after hearing Jill’s story on TV, something clicked with these people.

The story is all over the internet, so I don’t need to retell it all here, but there are some things about her story that help validate what I’ve been yelling about as an advocate, cancer widower, and parent of a BRCA2 previvor for some time now.

First, there was the part about how even with regular mammograms, cancer can be missed. Sitting next to Jill Martin on the Today Show set was her doctor who pointed out about breast cancer being missed in about 1-in-8 women despite regular screenings. Unfortunately, I know. I’m a widower because of that. Somehow, in spite of regular checkups and mammograms, my late wife’s triple-negative breast cancer was missed. When it was finally diagnosed, it was at a late stage.

Then, there was the part about genetic testing and how Jill’s BRCA2 mutation was found to be inherited from her father. Again, I know about that too. Unfortunately, in my wife’s case, it is through circumstantial evidence that we know that she inherited the variant from her father. Her father died over twenty years ago, long before genetic testing was ever considered for most cancer cases. But because he died of metastatic melanoma and had non-Hodgkin’s lymphoma, two BRCA2-related cancers, it is pretty obvious how my wife inherited the mutation. And, of course, we now know there are several other relatives in my wife’s family that carry the exact same mutation.

I admire Jill’s courage for publicly speaking up about her diagnosis and especially about the importance of genetic testing. And I wish her well in her struggle against cancer. As almost every reader and contributor here knows painfully well, a cancer diagnosis is truly traumatic and awful. But being a celebrity, I’m sure she will probably have no shortage of doctors willing to help her.

However, I truly wish she would have found out about her BRCA2 mutation without a cancer diagnosis. Not only for her and her family’s sake, but also for the sake of the hereditary cancer community. She could have used her status to help spread the word about germline mutations, genetic testing and the importance of sharing genetic information openly and honestly with family members as a previvor. But I now hope she will have that opportunity as a survivor.

As I’m writing this, I’m looking at my phone and the content on a social media site for business professionals. My algorithm, because of my advocacy and who I’m connected to, seems to feed me a lot of cancer stories. Today, even several days after the story broke, I’m still seeing posts about Jill’s story. And I feel a bit of resentment about how her cancer story is being told. Having started my career in the daily newspaper business, I shouldn’t be surprised, but with these types of cancer stories, celebrities are often portrayed as the only people ever affected by theseparticular diseases.

No, they are not. Unfortunately, they have become a part of a community that nobody wants to be a part of. It would be great if that was acknowledged. It could be an opportunity to let the world know about all the other unfortunate human beings out there that are living with cancer in their lives – be it patients, caregivers, survivors, or previvors.

To be honest, I hate hearing about anybody getting cancer. I abhor the evil disease! And what I have been saying about my late wife’s cancer — and how it could have been prevented — validated somewhat on the national stage does not feel like a victory. It leaves me feeling empty and wistful.

But I hope the national media will take the opportunity to put the spotlight on the rest of the hereditary cancer community and highlight some things that really need to be talked about. Like how knowing and sharing family history with your doctor is vitally important. And most of all, how genetic testing can save lives.

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