Don’t Get Blindsided By Lynch Syndrome

lynch syndrome

By Susan Adcox

Sometimes life seems like a series of collisions with fate. At least that’s how it’s been for my family for the last few months. 

First, back in February, we were blindsided by the news that my second daughter has Stage 3 colon cancer. Terrible news. Tragic news. But she took it like a trooper and soldiered on through surgery and chemotherapy, bolstered by the news that the tumor was negative for genetic mutations that would be passed on to her three children. She opted for further genetic testing, just to be sure.

Second blindsiding. Her tests came back positive for MSH6, one of the Lynch syndrome family of genetic mutations. Her kids have a 50-50 chance of inheriting the mutation.

lynch syndromeStill reeling, we arranged for more genetic testing. We needed to know which side of the family had passed on the mutation so that other family members could be informed. We suspected that it was my side because I had two relatives who had died of colon cancer. Still, in a sprawling family like mine – my dad had nine brothers and sisters – experts said that incidence wasn’t statistically significant.

Third blindsiding. It was my side of the family, which was no surprise. What did surprise me was how guilty I felt. I consider myself a logical person. I had already reasoned out that I couldn’t have known, that I gave my children lots of good genes, that I didn’t blame my precious father for passing it to me, so I couldn’t feel guilty about unknowingly passing it to my child.

But it turns out that I could feel guilty. And I did feel guilty.

I got the news in the office of the genetic counselor, who had insisted that we come in for our results rather than hear them over the phone. Wise woman. As I dissolved in tears, I was happy to have someone telling me what I already knew: It’s not your fault.

Still, over the next two days, I paced my house like a lost soul. I couldn’t cook or clean or organize. I didn’t want to watch television or go online. I didn’t even want to read. I felt an overwhelming, pervasive sadness. Twenty years ago, when I was diagnosed with a serious illness, I never wondered, “Why me?” I just figured, “It happens.” This time, however, I endlessly agonized: “Why my daughter? Why me? Why us? Why MY family?”

Of course, there are no answers, so eventually I stopped asking. And I have realized that it’s not all bad news. As my sensible granddaughters pointed out, nothing has really changed. Those of us who have the mutation have always had it. We just didn’t know it. And as we continue to track down those family members with the mutation, they can schedule stepped-up screenings and other procedures that will greatly reduce their chances of colon cancer or one of the other cancers involved in the syndrome. I’m already deep into that process.

Still, I can’t help but flash back to February, when I was in my gynecologist’s office waiting for the doc. Per my usual habit, I was reading everything posted in the room when I came across a two-part chart. One half described the BRCA genetic mutations involved in some breast cancers. logoThe other half described Lynch syndrome and how it increases one’s chances of colon cancer and endometrial cancer. I wondered why I had never heard of Lynch syndrome.

Now, of course, I know more about it than I could have ever wanted to know. And we continue to learn and cope and hope. But I still feel blindsided.

To learn more about Lynch Syndrome

Read more from Susan Adcox

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Susan Adcox

Susan is the Grandparenting Expert on About.com. Visit her at http://grandparents.about.com.

Read more from Susan about her daughter’s struggle with cancer:

Do You Know What to Say to a Friend With Cancer?

 

 

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