My advice for coping with Lynch Syndrome

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
when it’s more convenient for me. I just make sure that I
never skip an appointment.

Stay vigilant

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.

Find support

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.

Help others

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.

Request an appointment at MD Anderson online or by
calling 1-877-632-6789.