My Semicolon Life: Welcome to the cancer club

Jill Chang remembers the poster about Lynch syndrome that hung in her physician’s office. “Does cancer run in your family?” it asked in bold letters of warning-sign red. Cancer did run in Chang’s family, and as she read about the types — colon, uterine, stomach, ovarian —most often associated with the hereditary genetic mutation, the 40-year-old mother of two thought, “Oh, my gosh, this looks like my family.”

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If Chang, now 41, had known sooner that she carried Lynch syndrome, she would have done things differently. When she underwent her colon cancer surgery at age 30, she would have opted for a pre-emptive hysterectomy at the same time. Then she wouldn’t have had endometrial cancer last year. She wouldn’t have had to undergo that round of chemotherapy. Her curly blond hair would never have fallen out.

I met Jill and others with Lynch syndrome this past week at a seminar to train us to speak on behalf of people with this genetic disorder that affects as many as 800,000 people in the USA, more than 90% of whom don’t even know they carry it. I previously had exchanged Facebook messages with a few people who carry the mutation, but I hadn’t encountered them in person. Now I know their faces, their families and their fears.

Diane Shak let a doctor’s horror stories about hysterectomies and double mastectomies scare her away from genetic screening nearly 20 years ago, after her brother’s colon cancer diagnosis. Only after an older sister’s diagnosis of both Lynch syndrome and colon cancer did Shak get her own test.

Melissa Mitchell’s family knew that cancers ran among them, they just didn’t know all the different types were related. Mitchell, who is working on a second bachelor’s degree in criminal justice, can trace her cancer history back to 1867, and many of her relatives died in their 20s and 30s. Eleven members of her family have been tested for Lynch syndrome. Seven tested positive; three have had cancer. Mitchell had colon surgery four days after her Lynch diagnosis in May 2011.

The broken genes of Lynch syndrome most often result in colon or, in women, uterine cancers, but it puts carriers like me at an elevated risk for a variety of cancers. It can manifest itself in many ways. Miriam Masia, for instance, a music therapist from Miami, got diagnosed after having seven aggressive skin cancers removed. Cindy Timms, a theater and debate teacher in Texas, had a long history of tumors and migraines before developing colon cancer.

Laura Simonetti has never had cancer, but her father did. After her father underwent his third major surgery for colon cancer, a nurse recommended genetic testing to Simonetti. Together with a genetic counselor, she mapped out her family cancer history, gathering stories of illnesses from aunts, uncles and cousins. One week after the birth of her daughter, Simonetti tested positive for Lynch in December 2007. Now in her mid-30s, she’s considered having a hysterectomy to prevent the occurrence of uterine or ovarian cancer (she’s decided to wait).

Those of us who came together journeyed from a dozen different states. At 48, I was right in the middle of the group, age-wise, but I was also the newbie, since I received my Lynch diagnosis just two months ago. Some of them have been living with their diagnosis for many years and through multiple treatments.

Whatever differences we may have — age, gender, ethnic background, number of primary tumors — one thing we all have in common is our concern for our families. Having a name and a reason for our predisposition to cancer allows us to do something about it, not only for ourselves but for those around us. It allays our fears with hope.

I like to think that I bought my father a few years when his first colonoscopy, at age 74, revealed two polyps, one of them very large. Gene von Mosch, a financial planner, is convinced that he saved the life of his 27-year-old daughter, who was diagnosed with colon cancer after a positive Lynch test.

Diane Hardesty runs a bookkeeping and tax practice and uses a spreadsheet to track her family’s cancer history. She knows of 13 family members who have had cancer, 10 of whom have died. Not one of those deaths occurred after her family learned about Lynch syndrome. Hardesty’s doctors have caught pre-cancerous areas of her body six times. Thanks to vigilant screening because of her Lynch diagnosis, none of them have ever turned into cancer. She now advocates tirelessly on behalf of Lynch screening.

Five generations of Chris Moyer’s family have had hereditary cancers, including a cousin who died of brain cancer at 19. Moyer had his first colonoscopy when he was 21. He’s now 32 and has had a total of three. After his mother’s diagnosis with Lynch, he expected to need colonoscopies every two to three years for the rest of his life. But he tested negative for Lynch. As a result, Moyer is done with colonoscopies for a while. He won’t have to get another until he’s 50. And neither will his two sons.

If your family history looks like any of ours, you know how relieved he is. And if your family history looks like ours and you haven’t been screened for hereditary cancers, you might consider talking to your physician about it.

Music that makes me want to live

Cancer has changed the way I hear music, more than any other life event except my marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before, I’ve got no use for now. I’ve also got more time to listen, whether it’s during my morning exercise time or while lying in a hospital bed. These songs form part of the soundtrack to my cancer story.

1. Even If It Breaks Your Heart, Eli Young Band

2. Sweet Spot, Tift Merritt

3. Worry Walks Beside Me, Michael Kiwanuka

4. Safety Line, Sixpence None the Richer

5. When I Saw You Leaving (For Nisey), Alan Jackson

Next week: Back to the doctor