My Lynch Syndrome, Part 11

Allow me to close the series out with some empowering takeaways that put a Lynch Syndrome diagnosis in the proper perspective…

and will keep you and your loved ones alive.

First, don’t bury your head in the sand.

If you have a family history of cancer–of the uterus, ovaries, bladder, ureter, kidney, stomach, small intestine, liver, pancreas, prostate, and oil glands (there may be others), take seriously the possibility that there is a hereditary component to such histories.

Especially–I repeat ESPECIALLY–if there’s a family history of colon or uterine cancer at a young age, talk to your doctors and get tested for Lynch Syndrome.

And if you happen to test positive for the Lynch mutation, don’t hide it from your family. As difficult as that conversation might be, sharing that information may save others in your family as well.

Second, if you discover that you or a loved one has Lynch Syndrome, don’t freak out.

Realize that such knowledge—as upsetting as it—is power. The power to design a surveillance program with your doctors that will enable you to “stay ahead” of the most common types of Lynch cancers, and thus to swing your odds of living a relatively long and healthy life hugely in your favor.

Specifically, colon cancer is by far the most prevalent of the Lynch cancers–with a lifetime prevalence so high that you should just assume your body is going to make colon polyps. That said, the great news is this: Getting an annual colonoscopy and upper endoscopy (EGD) almost guarantees that you’ll painlessly nip any pre-cancerous polyps (adenomas) in the bud and keep you alive.

Women, of course, should develop a surveillance plan with their gynecologist (which may include a preventative hysterectomy). I dare not give any specific advice beyond this mention.

And if you’ve got the Muir-Torre variation, regular dermatology exams are almost guaranteed to nip sebaceous adenomas in the bud and keep you alive and beautiful.

There are other valuable surveillance methods as well–blood work, urinalysis, imaging, and clinical examinations—all of which act as early-warning systems—and have the power to further swing the numbers in your favor.

As inconvenient as all the above might be, take it all in stride. Just think of it like going to the dentist, doing your taxes, or doing regular maintenance on your car.

By the way, I (Frank) am talking because I know. I’ve been there and still am here because I’m armed with knowledge and a plan that works.

I encourage you all to dig deep and do the same. Do it for you, for those you love, and for those who love you back.

continue… My Leukemia, Part 1

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