M34 — August 2012 — Lynch Syndrome
Intro: Teenagers. One of the last things on their minds is a diagnosis of cancer. Especially if it’s a type of cancer that adults usually get. But the teen you’re about to meet has a gene that greatly increases her risk of colon cancer. It runs in her family and many of her relatives have battled the disease. So did she. Vivien Williams has the story of one family’s journey with what’s called Lynch Syndrome.
“My mom and I are very close.”
So whenever they can, Emily Ruby and her mom Karen Sansom hit the local shops to enjoy a hobby they’ve shared for years.
“We shop a lot together. It’s our favorite activity.”
They also share something else. A gene that runs in their family that dramatically increases their risk of developing colon and some other types of cancer.
“There was a history of colon cancer in our family.”
On Karen’s father’s side.
“We could trace it back to his mother, his sister, his grandmother.”
Karen is also a survivor. And so is 24-year-old Emily, who was diagnosed at age 19.
“It kind of aged me quickly.”
“At some level I was prepared for it maybe later in her life, but at age 19 it was completely devastating.”
The condition is called hereditary nonpolyposis colorectal cancer, or Lynch Syndrome.
“It's a form of hereditary colorectal cancer and it runs in families and they're at risk not only of colon cancer, but of a variety of other cancers.”
Dr. Amy Oxentenko says if you have Lynch syndrome there’s a 50/50 chance you’ll pass it on to your children. Genetic testing can verify if you are a carrier.
“If you find out you have it, based on your family history or any kind of testing, you need to begin a very vigorous screening and surveillance program.”
The program includes colonoscopies starting at age 20 or younger, depending on your family history. Upper endoscopies to check for stomach and small bowel cancers. Plus early and regular screening for gynecologic and kidney cancer. The goal is to catch pre-cancerous or cancerous lesions early while they’re still curable.
“The most important thing is to educate yourself.”
Emily and Karen are both doing very well. In fact, the visit to this flower shop marks a very special anniversary. It’s been 5 years since Emily’s diagnosis and she is now cancer free.
“It’s a big day to celebrate. I’m very happy about that.”
For Mayo Clinic News Network, I'm Vivien Williams.
Emily is quite an inspiration. She was in college when she was diagnosed, but she didn’t let cancer stop her. She kept going through treatment and got married afterwards.
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