A woman living with Lynch syndrome discusses the importance of preventive strategies.
Look under "#previvor" on Instagram, Facebook and TikTok, and you will see posts of young previvors with hereditary cancer syndromes sharing glimpses into their daily lives. To reduce their risk of developing cancer and assume some control over their genetic destiny, they may remove perfectly healthy body parts such as their reproductive organs and/or breasts, sometimes both, depending on their mutation. Most of them are laser-focused on cancer prevention as their wellness plans emphasize plant-based diets, workout routines and spirituality.
Knowledge is only power if it is actionable, right? Yes, and you cannot attribute good health to one factor – it is an assemblage of things. Previvors pride themselves on taking action, and ten years ago, I began my journey as one when I found out I have Lynch syndrome, the most common hereditary cancer syndrome. Lynch syndrome significantly increases your chances of developing various types of cancers, especially for those under 50. There are five known Lynch syndrome mutations. The cancer risks slightly vary amongst them, and there is variation in the frequency of specific cancers between the sexes. A mutation in the MLH1 gene is running amok in my family. Men and women with a mutation in MLH1 have a 52-82% lifetime risk to develop colon or rectal cancer, up to age 70. For women with MLH1 or MSH2 mutations, the lifetime risk of endometrial cancer is approximately 40%, with a median age of 49. The lifetime risk for ovarian cancer is 4-13%, up to age 70.
Both of my brothers developed early-onset colorectal cancer (CRC) even though they lived very different lifestyles. "J" was an extrovert who drank beer, smoked and did not exercise. Our family was unaware of Lynch syndrome and its implications when J was diagnosed with CRC in his mid-30s, and by the time he received his diagnosis, it was too late; he did not stand a chance. J died not long after his diagnosis.
"N" is somewhat the opposite of J – an introvert who is in stellar shape because of his daily workouts, eats well, never smokes and does not drink much. N sadly got CRC in his late 40s and eventually had his entire colon removed.
Does adopting a healthy lifestyle stave off cancer? Or is it merely a crapshoot? Or will genetics eventually trump our efforts and finally rear its unlovely head? Two entirely different lifestyles, yet they both developed cancer. However, within my own family, it seems as though good habits have implications for those with Lynch syndrome.
This is why we need to watch the previvors closely, specifically the aging ones. Sadly, many older ones are not on social media platforms giving us glimpses into their daily lives, but why? Perhaps many of them are reluctant to share their insight simply because they are not interested in tempting fate. Having Lynch syndrome does not mean you will 100% develop cancer, but why? What good juju are aging previvors using to keep cancers away?
Losing my brother to CRC fueled my decision to reduce some of my cancer risks. Due to my increased risk for endometrial and ovarian cancer, I did not hesitate to undergo the recommended prophylactic measures at that time. I am not a paragon of health like N, but I do my best to avoid processed food and red meat. My diet is full of mushrooms and berry-rich protein smoothies that I have every morning, and I walk a lot. I have been vigilant with my annual scopes, and per the recommendation of my doctor, I take a high dose of aspirin as chemoprevention.
I have not developed early-onset CRC or any of the other charming Lynch syndrome-related cancers thus far. I cannot attribute my health to one thing – it's an assemblage of them. Both of my brothers developed CRC even though they both lived very different lifestyles.
The most significant difference between my brothers and me is the frequency of colonoscopies and my aspirin consumption. Aspirin prevents the formation of colon polyps in Lynch syndrome patients. After J died, I began having colonoscopies at age 25, every couple of years -- I knew there was a hereditary component to this. I did not know to which degree, but something told me to start getting colonoscopies regularly. When I was diagnosed with Lynch syndrome ten years ago, I began having annual colonoscopies.
In my opinion, good daily habits are essential, but they are simply not enough to stave off cancer for those with Lynch syndrome. Meticulous, frequent colonoscopies and adopting chemoprevention are crucial, too. Still, colonoscopies and other warranted screening measures may prevent cancer or at the very least, catch it in its genesis when it is most treatable. If you have Lynch syndrome, would you please talk to your doctor to learn more about aspirin for chemoprevention?
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