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She With Lynch Syndrome


I recently met another woman with Lynch syndrome, the same hereditary cancer syndrome that I have, and it made me reflect on the steps I was taking to maintain my health.

While walking my dog a few months ago, I met "B," another dog owner in her 40s, who briefly mentioned that she was convalescing from colorectal surgery. She had a third of her colon removed and then told me she was a two-time cancer survivor — she shared that her medical struggles first began with brain cancer.

"You wouldn't happen to have Lynch syndrome, do you?"I inquired. She looked at me with total disbelief. "Why, yes!!! How do you know about Lynch?" she asked.

I told her I knew a little about Lynch syndrome because I, too, have it. She was shocked because she said she had never met anyone outside of her family with it. We have come to know each other quite well since, and I am impressed with her never-ending optimism and attitude toward her medical challenges.

She and all of the new medical advances for those with Lynch syndrome give me hope for if and when I ever develop cancer. But B also makes me question my situation, and then that pesky survivor guilt pesters me. 

What on Earth am I doing to prevent cancer thus far? Why have both of my brothers developed cancer, and why have I not? Jimmy developed colorectal cancer and died at 36 in the 1990s. Nick developed colorectal cancer at 48 and biliary tract cancer at 59, which is now in remission thanks to immunotherapy.

I know that the MLH1 mutation cancers manifest differently in men and women. Having prophylactic surgeries to prevent cancer in my reproductive organs has been instrumental in reducing my risk of developing uterine and ovarian cancer. Per my doctor's recommendation, taking aspirin every day for the past 10 years has most likely reduced my chances of developing colorectal cancer.

When I was diagnosed with Lynch syndrome 12 years ago, we did not have a lot of options or hope, and I was anxious and found myself on various social media platforms to see what others with Lynch syndrome felt and experienced.

I was not alone. Those who seem most pessimistic about their Lynch syndrome diagnosis have not spoken with a certified genetic counselor to understand what their specific mutation means for them and what they need to do to mitigate their cancer risks, or at the very least, catch cancer in its genesis when it is most treatable.

Undergoing frequent and meticulous screenings and colonoscopies has played a considerable role in maintaining my health. But there is more. Eating well and avoiding processed foods, with a strong focus on a plant-based diet, has been helpful. I eat an obscene amount of mushrooms, which are high in vitamin D and may help prevent colon polyp formation. I consume prebiotics and probiotics to optimize mymicrobiome health. Daily exercise is a must, but fighting Lynch does not end there.

I have learned that overall wellness is essential. Health is not just about genetics and what I eat. Focusing on mindfulness, showing gratitude, spending time in nature and eliminating the toxicity in my life have been crucial to my health.

Furthermore, keeping up-to-date with all the latest medical research on Lynch syndrome and advances in AI for medical technologies gives me tremendous hope for the future. The future is bright for those of us with Lynch syndrome and, most likely, for most of us with a hereditary cancer syndrome.

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