In 2016, I found out that I had inherited a genetic mutation known as Lynch Syndrome from my mother, who’d died 26 years earlier from cancer.
The news was overwhelming, to say the least. But now that I’ve been actively managing this hereditary cancer syndrome for nearly a year-and-a-half, I’ve finally made peace with it.
If you’ve just been diagnosed with Lynch Syndrome, here’s my advice for you.
Follow the screening recommendations
For people with Lynch Syndrome, cancer screenings should begin in the early 20s. I didn’t know I carried the mutation until I was 32. My first colonoscopy showed I’d already developed a polyp that was likely to become cancer. Thankfully, colorectal cancer is one of the most preventable cancers because colonoscopies allow doctors to remove suspicious polyps before they turn into cancer. I also regularly undergo other screening exams, including skin and ovarian screenings, as well as blood draws, ultrasounds and biopsies.
I usually begin my screening process around the same time every year so that it’s easier to remember. I undergo all of my exams at MD Anderson, and they usually set up my appointments back-to-back to make it less complicated. Sometimes, I’ll get my skin checkups at MD Anderson in Sugar Land when it’s more convenient for me. I just make sure that I never skip an appointment.
I am very aware of the signs of ovarian, colorectal, and uterine cancers – all of which are cancers that run in my family. Ovarian cancer can be hard to detect, but I pay attention to my body and look for abnormal vaginal bleeding, bloating, abnormal back pain, blood in the stool and drastic change in appetite, etc.
Enforce healthy lifestyle habits
Your weight, diet and physical activity can make a big impact on your cancer risk. I try to eat at least 3-4 cups of leafy greens a day, maintain a healthy weight and exercise when I can -- even if that means only running up and down the stairs a few times after I put my 3-year-old to bed! I don’t eat red meat often, I wear sunscreen daily, I stay away from secondhand smoke, and I try to avoid processed foods. I am definitely not perfect in all of this, but I try for the most part to maintain these daily habits. I also get a yearly physical.
My maternal aunt and cousin also have Lynch Syndrome, so we help each other stay on top of our screenings. But I’ve also connected with other “Lynchies,” and we have created our own little support system via group texts.
There are also tons of Lynch Syndrome social media groups. These are a great place to find others going through the exact same thing you are.
If you’ve just been diagnosed with Lynch Syndrome, reach out to other family members who may also have this genetic mutation. My aunt did this to me, and if it weren’t for her, I may have continued to live my whole life unaware that I was at an increased risk for cancer.
I think it’s also crucial for us to help educate others about Lynch Syndrome. I have read that nearly 90% of people with Lynch Syndrome don’t know they have it. By advocating and raising awareness about it, you could save lives.
You can thrive despite Lynch Syndrome
My grandmother, who also has Lynch Syndrome, is 80 and has never had cancer! We should be grateful that we know about our genetic mutation because we can take extra precautions to mitigate our risk. In fact, I learned a new term through all of this: previvor. This is a term for someone who has a genetic predisposition or genetic mutation who has not developed cancer. I am truly grateful to be a previvor.