It's been almost two months since I posted. I think about posting now and then, but life has a way of moving on and that's a good thing.
Yesterday Mike had a blood draw to check his CEA (carcinoembryonic antigen) levels. An increased level can indicate the presence of cancer, but not always. When Mike was originally diagnosed, his level was in the normal range. We'll find out the results next week when we meet with the oncologist again. This will be our first meeting with him since it was confirmed that Mike has Lynch Syndrome.
Some of the questions we need to ask: What type of surveillance needs to be done and how often? Should we have the kids tested now and do it anonymously or wait and let them decide when they're older? If we have the kids tested now, will it really make a difference in how we proceed from here? They are obviously at risk because Mike has Lynch so early screenings will happen anyway. However, if they are negative for Lynch then they have the same risk as the rest of the population for getting colon cancer and wouldn't need to have such an early colonoscopy at 25 or younger. What can we tell Mike's family, especially siblings, so they can make their own informed decision about testing?
Then there's Mike feeling tired. There's a logical explanation because it's fire season. He's been doing prescribed burns for the last month, which means long hours and a lot of physical work, not to mention the smoke. But, there's still the little nagging voice in my head that tells me to look at him closer. Last year I didn't notice that he was getting paler and paler. When you see someone every day and you aren't looking for obvious signs that he isn't well, it's easy to miss. Now I look. When he says he isn't very hungry or that he feels full after eating only half of a meal, I'm reminded of last year. For about two months before we found out he had cancer, he complained about feeling full even though he hadn't eaten very much. It's hard not to go there and think about the worst.
Next Wednesday can't come soon enough. I want to know what we do next. There was talk about doing an MRI sometime in June or July, but that was before Lynch. Maybe the onc will schedule it sooner. Maybe Mike will have a colonoscopy in June instead of December. After his December colonoscopy came back clean he was told he didn't need another one for a year. That was before Lynch.
Yep, life keeps moving on. Then when you least expect it, the past sneaks back in.
On June 25, 2010, at age 37, my husband was diagnosed with colon cancer. Following a right-hemicolectomy, genetic testing determined the cause was due to HNPCC/Lynch Syndrome. On December 9, 2011 he had a subtotal colectomy.
Hello there. It looks like your husband and I were diagnosed around the same time. My cancer was found in July of 2010 and an MSH2 defect was found a few months later. We've been battling to have our boys tested. We have a daughter who had a GBM (brain tumor) and passed away in December of 2008. My genetics specialist thinks it highly likely that she carried the mutation and it caused her cancer. Turcot's syndrome is my official diagnosis based on that assumption. Because of that it's been recommended our boys be tested...however, there is no surveillance protocol. It's really all a pain. *sigh* We're preparing to pay out of pocket for whatever we need to until we confirm or rule out a diagnosis.
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