After my Lynch Syndrome diagnosis, I’m grateful to be a previvor

When I was 6 years old, my mother died from cancer. She was only 35, and at the time, her death came as a shock to everyone in our family.

About 24 years later, my maternal aunt was diagnosed with serous uterine cancer. Her oncologist noticed a pattern of cancer in our family. Genetic testing confirmed his suspicion: my aunt had Lynch Syndrome, a genetic mutation that increases a person’s for colorectal and uterine cancers. Her daughter had it, too. My sister and I started receiving calls, desperately urging us to get tested. 

My Lynch Syndrome diagnosis

My sister and I both saw a genetic counselor, and considering how Lynch Syndrome can be passed on to your children roughly 50% of the time, it shouldn’t have been a surprise when she tested negative and I positive for the mutation.

I listened as the genetic counselor told me that my likelihood of cancer would be extremely high if I didn’t stay vigilant. She said that I would need to have my ovaries and my uterus removed, and worst of all, that my 3-year-old son could have Lynch Syndrome as well. I felt as though the air had been taken from my lungs. 

The genetic counselor referred me to MD Anderson. On Aug. 23, 2016, I walked through the halls of MD Anderson for the first time since my mother’s death. I remembered visiting her there when I was a little girl. I was incredibly depressed and anxious, especially because according to the Lynch Syndrome standards, I should’ve begun my screenings 10 years earlier, when I was in my early 20s.

Focusing on prevention, screening and early detection

Thankfully, I didn’t have cancer yet, and Dr. Eduardo Vilar-Sanchez reassured me that we’d do everything possible to reduce my risk of cancer going forward. That means undergoing annual colonoscopies, skin exams, blood draws, bladder tumor marker and uterine biopsies. I also get an upper endoscopy every other year, as well as ovarian cancer screenings and ultrasounds every six months since my great-grandmother developed ovarian cancer at age 40. I’ll also begin annual mammograms when I turn 35 this year, and I plan to undergo a complete hysterectomy before I’m 40.

In addition to these regular screening exams, I’m always on the lookout for symptoms of ovarian, colorectal and uterine cancers. Dr. Vilar-Sanchez even quizzes me about them! He also tells me about new research studies and clinical trials, as well as promising new treatments for those who develop Lynch-related cancers.

Gratitude for exceptional care and support

The last year-and-half has been an emotional rollercoaster, but I’m adjusting to my new normal. My cousin and aunt who were also diagnosed are my support group, and we regularly check in on one other to make sure we are staying on top of our screenings. 

I am extremely grateful to be a “previvor” — a term I never knew before! — and equally grateful to be a patient at MD Anderson. Many people do not have access to such amazing preventive treatment – I mean, I get my annual scopes with Dr. Patrick Lynch, the son of Dr. Henry Lynch, who is the “father of hereditary cancer and prevention” and after whom my mutation is named. So, I truly feel there isn’t a better place to help me take charge of my health.

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