Lynch Syndrome sprouts on the family tree

My PE teacher in elementary school was Mr. Lynch. I have no idea why I remember his name when I can hardly remember the names of my relatives. It certainly is not because PE was my favorite class. As a matter of fact, I distinctly recall doing anything possible to get out of participating in PE. I was a ballerina; sports were not my thing. This really has nothing to do with what I am about to write but, for some reason, it's what comes to mind every time I think of Lynch Syndrome.

Six months ago I had never heard of Lynch Syndrome. Then, 72 hours changed everything. It was Yom Kippur Kol Nidre service - the high holiday, the holiest day, a day of repentance and thought. My husband, Kurt, had been so tired lately, his color was all wrong and he was forgetful and grouchy. A good friend of ours saw him at services and told him he was calling in lab work to have done at the hospital in the morning. The next day he went in and had some blood drawn. It was a Thursday. Our friend called a couple of hours later to let me know Kurt was really sick. In fact, his hematocrit was so low, the hospital staff didn't know how he was even walking. Kurt had played softball twice that week! He ordered a CT scan to try to determine where the internal bleeding might be. There was nothing I could do but wait.

A few hours later, another call. The CT scan showed something in his intestines. They thought it was colitis - some inflammation of unknown cause. The first choice to be made: he could go home for the night and then return to the hospital the next day for a colonoscopy or just check in now and get things started. We didn't see much point in delaying things so we met at home just long enough to pack a small bag and return to the hospital. I got him settled and returned home to the kids.

The next morning meant more waiting. I got the kids off to school and went into work. I had to keep busy. The colonoscopy was scheduled for 10 AM. Around 10:30 he called to tell me the surgeon had shingles so he was delayed until the afternoon. I was sitting at my desk when I got the call. The doctor said Kurt was recovering nicely. The procedure had gone well but Kurt needed more surgery. The scope made it far enough to find a mass at the junction of the large and small intestine. "He has colon cancer," the doctor told me in a very matter of fact tone. I suppose the lab results were so extreme, the doctor figured I must have known he was really sick. I thanked him for his call, hung up the phone and went back to work. I was in a bit of a haze but there were things I had to get done before the kids were out of school and there was nothing I could do at the hospital until Kurt woke up.

I was in shock. No, I wasn't. To be perfectly honest, given his mother's history with colon cancer, as soon as I heard the results of the CT scan I expected the diagnosis. I finished up at the office, rounded up the kids and returned to the hospital. Kurt and I talked about the results and the next steps. More surgery. I returned home to explain things to our 3 kids - ages 16, 14 and 8. I called my folks and his mom, then went to bed. On Saturday morning we all went to the hospital. Kurt and I met the surgeon. We were confident in his ability and quite surprised to find out he had been through the same thing just a few years ago. Kurt went into the OR. More waiting.

My folks kept the kids busy. The surgery finally ended. We all sat down in a room while the surgeon explained what he had done. The mass, 8 inches of colon, his appendix and several lymph nodes had all been removed. No colostomy and the abdominal cavity looked good. All good news. The tissue would be sent to pathology but it was just to confirm the cancer diagnosis at this point. After that, the talk of family history and testing for Lynch Syndrome began.

Never having heard of Lynch Syndrome before, I did a little research. Not nearly as much as Kurt did while recovering in the hospital over the next 5 days, but I did look into things a bit. The bottom line was this: Lynch Syndrome is a genetic disposition to get cancer - predominantly colon cancer but other cancers as well. A couple of months after the surgery and about halfway through his chemotherapy, he had the genetic test done. Not surprisingly, it was positive. More choices: do we have the kids tested? If so, when? Does it matter what the test results would be or is it just important to watch them more closely than would be routine for cancer screening? How will this information effect their lives? On the up side, we can look for early signs and do some preventive work. On the down side, do they carry a cloud of having a greater chance of developing cancer?

Cancer is a weird thing. The word makes people speak in hush tones and brings pity. The diagnosis is both terrifying and a relief to know what's going on. The prognosis for Kurt is great at this point but Lynch Syndrome means we could go through this all again with Kurt and/or with our children. The more answers we get, the more questions we seem to have. Perhaps all the confusion, choices and waiting is why my head chooses to go back to elementary school every time I hear someone say, "Lynch."

Stay tuned and I'll let you know about all the other things you need to think about when someone in your life is diagnosed with cancer. The things you don't hear about from the doctors or read about on the websites. The day to day stuff... Of course, it may not be any time real soon. My priorities change even more rapidly now than they did before!