Learning to fit in and conform with other children is a rite of passage for most of us, but when someone is living with a genetic disorder and the life-long threat of cancer, those formative years can be fairly tough. Just ask Kevin Myers. He has an inherited genetic disorder that results in a very high risk for colorectal cancer. It is called familial adenomatous polyposis, or FAP.
“I was seven or eight years old when I became aware that my dad’s mom and brother had died from this cancer, and my dad was frequently having pre-cancerous polyps scraped out of his intestinal track. That’s all they could do in the 40s and 50s. My brothers and I grew up knowing we would need regular surveillance, including colonoscopies starting in our teens,” Kevin remembers.
Kevin was nearly 14 when he had his first colonoscopy, which showed large colonies of pre-cancerous polyps in his intestinal tract, polyps capable of morphing quickly into advanced cancer. To prevent this from happening, Kevin’s colon and rectum were removed surgically and an ileostomy or opening was formed on his abdominal wall, allowing waste to empty into an external bag, or appliance.
Naturally shy to begin with, wearing and changing what in those days was a fairly primitive, smelly waste bag made it difficult for Kevin to socialize and make new friends. He often felt ashamed and set apart from his peers. Gym class, having friends, girlfriends, and trips away from home all had the potential of presenting difficulties. Eventually, he and his brothers formed their own support network for dealing with the emotional challenges they faced as teens.
The years since then, which included some psychotherapy, have helped Kevin to recognize and deal with the resentment and grieving he went through as a young adult. He is married to his college sweetheart. They and their daughter, who does not have the genetic mutation that causes FAP, enjoy an active, outdoor life. They are avid tent-campers.
Because he still needs active surveillance of his upper gastro-intestinal tract, Kevin is enrolled in a clinical trial at UMHS. Last fall, Kevin learned through his medical team of a day-long conference for families with FAP or Lynch syndrome.
“I was inspired by the conference and amazed at the number of people with a familial genetic mutation that connects to colorectal cancer. I wondered about support groups, but it turns out there wasn’t one in the Ann Arbor area,” says Kevin.
Believing that knowledge gives power, and wanting others with FAP or Lynch syndrome to find the support he witnessed at the conference, Kevin worked with The Hereditary Colon Cancer Foundation, UMHS and the Cancer Support Community of Greater Ann Arbor to organize the area’s first support group for families like his. As a therapist who also has FAP, he is in a unique position to lead the peer discussions and to coordinate educational presentations by health professionals.
“There’s positive energy when we come together, a sense of relief. There’s encouragement when you see that others are coping and living a full life, and the group support is helpful when you need more knowledge in order to make informed decisions,” he says.
The Lynch Syndrome/FAP Peer Discussion Group meets on the third Thursday of every month from 6:30-8:00 p.m. at CSC. For more information, call Rosie at CSC, 734-975-2500, or e-mail her at email@example.com.
Take the next step:
- Learn more from the Comprehensive Cancer Center about risk factors for colon cancer.
- Find more about genetic testing at the U-M Health System.
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