Having a Hereditary Cancer Syndrome Has Changed My Life

After meeting with a genetic counselor, undergoing genetic testing for Lynch syndrome II, and testing positive for a MLH1 mutation 11 years ago, I was shocked. Both of my brothers had colon cancer, but after meeting with a certified genetic counselor, I understood the gravity of the situation, the variety of cancers that can be involvedand the impact this could have on multiple family members — even extended family members.

Having Lynch syndrome significantly increases your chances of developing colorectal cancer, but it also may increase the likelihood of many others. Knowing you have Lynch syndrome can be a good thing; it allows you to be proactive with your health by undergoing frequent scopes and screening, which can catch cancer in its genesis when it is most treatable.

My genetic counselor provided me with a letter to send out to all my family members, along with information about MLH1 and why they need to meet with a genetic counselor to discuss whether genetic testing would be warranted.

My family is Greek, and some of them are superstitious. Many family members believe in the evil eye, a supernatural belief in a curse brought about by a malevolent glare, usually given to a person when one is unaware and probably attributed the evil eye to my immediate family's bad luck with colon cancer. Cultural components were not considered when this letter was crafted, but looking back, I wonder if some of my relatives truly understood the implications of possibly having Lynch syndrome. Out of the dozen relatives I contacted, only one decided to undergo genetic testing.

Immediately following my diagnosis, I underwent the recommended prophylactic surgeries. I had all my reproductive organs removed, and as a result of having my ovaries removed, I fell ill. Even though I was immediately put on hormone replacement therapy, it took several months to tweak the dose. Long-term debilitating nausea became my most significant issue, which led to lethargy, weight loss and depression.

My Lynch syndrome diagnosis also affected my lifestyle. I became more interested in overall wellness and began to read and learn more about it and tried to incorporate it into my daily life, as diet and exercise are not enough.

I once read a quote that stuck with me: “Your diet is not only what you eat. It's what you watch, what you listen to, what you read and the people you hang around, be mindful of the things you put into your body emotionally, spiritually and physically.”

I had to focus on improving my mental well-being as our thoughts can influence our health. I turned to meditation, have made a concerted effort to spend more time in nature and try to limit things and people which do not nourish me.

Having Lynch syndrome created a lot of anxiety for me. Reading about it, keeping abreast of all the latest research and seeking out the best medical treatment I can afford has been instrumental in helping me deal with the diagnosis. Undergoing frequent colonoscopies coupled with aspirin therapy per my doctor's recommendation has nipped colon cancer in the bud for me — having colon polyps removed before they become cancerous is why annual surveillance is suggested for those with Lynch syndrome. Meeting the yearly insurance deductible is not cheap, but has helped keep me cancer-free, thankfully, thus far.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.