Information for Patients, Lynch Syndrome

My Semicolon Life: Tracing my family’s cancer history – by Brian Mansfield


 

My Semicolon Life: Tracing my family’s cancer history – USATODAY.com.

 

USA Today

USA Today (Photo credit: Wikipedia)

 

When USA TODAY‘s Nashville music critic Brian Mansfield was diagnosed with colon cancer at age 48, he figured that a lifetime of Southern-fried foods, extra-large sodas and stress eating on deadline had brought it on. Turned out he had a genetic syndrome that gave him an 80% chance of developing colon cancer. He’ll chronicle his life with the disease — and with only a small part of his colon — in a series of weekly installments.

 

Every time my older son gets an upset stomach, he gets a little spooked.

 

This summer, he didn’t seem worried. My surgery and recovery went well enough that he didn’t have to spend much time wondering if things might go badly. Besides, people brought food.

 

Now that he’s back at college and on his own, he’s thinking less about my short-term issues and more about his long-term ones.

 

Like, when’s he going to get cancer?

 

COLUMN: Last week’s installment

 

MORE: Follow Brian on Twitter

 

MORE: ‘Music that makes me want to live’ playlist

 

As the son of someone with Lynch syndrome — a hereditary genetic disorder that exponentially increases one’s susceptibility to cancer — it’s not an unreasonable question. He knows he’s got a 50/50 chance of carrying the same mutation I do, and he knows that my own digestive problems led to my colon cancer diagnosis. He wants to get screened for Lynch, and he’d rather do it sooner than later.

 

So this week I went to see someone who could help me get a handle on the genealogical aspect of the situation. An advanced practice nurse in genetics, she’d typically walk someone — my son, for instance — through his likelihood of having a genetic disorder, then take a DNA sample to have it tested. Since I already had tested positive for Lynch, she created a family tree showing our cancer history, then outlined the steps I should take to alert and protect both my immediate and extended family.

 

In order to rule out additional syndromes, she asked questions about sebaceous skin tumors, thyroid glands, fibroid tumors and my ancestry of origin. Lynch doesn’t appear to be a respecter of ethnicities, but other mutations are: For instance, the BRCA mutations, which can produce a hereditary breast-ovarian cancer syndrome, are common among Ashkenazi Jews. She also measured my head: A larger-than-normal measurement could signify Cowden syndrome, a much rarer hereditary disorder that often results in multiple benign tumors and an increased cancer risk.

 

As for the family history, cancer showed up occasionally on my mother’s side, like the great-aunt who died of breast cancer in the mid-1950s after having worked in the Oak Ridge, Tenn., nuclear program during World War II, but no patterns emerged. My father’s side of the family, however, told a different story.

 

On our own, my family had focused the search on the Carter/Geralds side of my father’s lineage. When we put the Mansfields on paper, though, there was plenty of evidence to suggest troubles of their own. My grandfather, a heavy smoker, had oat-cell lung cancer when he died at 62. He had two brothers — and maybe a third — who died from colon cancer. Also, I have a second cousin on that side diagnosed with colon cancer at age 50.

 

Still, it’s my paternal grandmother’s branch that most strongly suggests Lynch. When Granny was in her 50s, she had a hysterectomy. She didn’t talk about it then, and she can’t tell us much about it now. As we’ve pieced together family lore, we’ve come to believe her doctors were concerned about uterine or ovarian cancer (both Lynch-related), so they removed the organs most at risk. One sister also had a hysterectomy after being diagnosed with endometrial cancer; when a malignancy recurred in her kidneys, it spread throughout her body and took her life. A brother died of lung cancer in 2009. Ovarian took the youngest sister this spring.

 

In the next generation, colon cancer hit three first cousins, all when they were in their 40s. Now, there’s me.

 

Facebook helped me gather these stories. This weekend, it’ll help me spread a message that’ll read something like this:

 

Dear ______,

 

As you know, I had surgery for colon cancer this summer. During the course of my treatment, I learned that I carry an hereditary genetic mutation called Lynch syndrome that greatly increases the likelihood of developing cancer in the colon, stomach, uterus, ovary and other places.

 

After looking through our family’s history with a cancer genetics professional, we’ve determined that the disorder came from my father’s side of the family. You probably already know how prevalent those cancers have been across our generations. Because of that, I’d like to suggest that you contact a cancer genetics professional in your community to help you assess your own risk of carrying the mutation.

 

While a Lynch diagnosis can be a scary thing, it also brings empowering knowledge. With proper screening, the most common Lynch-related cancers can be discovered early, even prevented.

 

The National Center for Biotechnology Information website has a section that you can use to find cancer genetic counseling near you. If you decide to get screened, I’ll be happy to send you a copy of my genetic test result and my pathology report. Soon, I should also have a pedigree that shows our family cancer history.

 

Since my surgery, I have recovered nicely. But few things would make me feel better than knowing I kept somebody else in our family from going through the same thing I did.

 

Sincerely,

 

Brian

 

Meanwhile, I’m calling my father and my sons to help them make their own appointments. They’ve got tests to take.

 

 

 

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About kjmonahan

Service lead for Family History of Bowel Cancer Clinic

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