Monday, June 20, 2011

Living with Lynch Syndrome

The conference Mike and I attended this weekend was both hopeful and realistic.  The amount of information was a bit overwhelming at times, but helped to put into perspective the reality of living with Lynch Syndrome.  To be in a room with nearly 100 other people that have been touched by LS and know that they ALL completely understand what you have gone through and will continue to go through is pretty amazing.  Being able to have a conversation with someone about LS without their eyes glazing over is tremendously supportive.

We learned that Lynch tumors grow differently than non-Lynch tumors, that polyps associated with Lynch are often different than regular polyps, and how treatment varies based on whether the cancer is Lynch related.  The other thing I learned is just how resilient this community of people can be.  It was not unusual to hear of people having several incidents of colon cancer, followed by two other cancers associated with Lynch.  Yet they are still alive because of strict surveillance and having doctors who knew what to look for.

On the other hand, even with surveillance there are stories of people being diagnosed with Stage III colon cancer even after getting yearly colonoscopies.

This conference was also the kick in the butt we needed to get more proactive in Mike's care.  It's easy to get complacent, even about Lynch Syndrome, when the rest of life continues on as normal.  While I am grateful to live in the community we do and that we were able to be close to our support system during Mike's surgery and recovery last year, I also know that we need to look beyond Dodgeville if we are to do everything we can to keep Mike cancer-free.

We have decisions to make in regard to how we proceed.  The prescribed treatment for Lynch Syndrome is removal of the entire colon. In addition, a woman should have a hysterectomy including ovaries and fallopian tubes just as soon as she is done having children.  These are enormous life-changing decisions.  Deciding when to have our children tested is huge too.  One one hand if they are both negative for Lynch we breathe a huge sigh of relief with the knowledge that they are at no higher risk for colon cancer than the general population.  But, what if one or both are positive?  I'm not ready for that answer yet.  The idea of my kids having to live with this breaks my heart. 

One story was of a dad that had colon cancer and based on some family history genetic testing was done.  The results indicated that he had Lynch Syndrome.  At that point his three children were also tested.  One daughter was negative, but his son and other daughter are positive.  Shortly after confiming that she too had Lynch, his daughter had her first colonoscopy.  At age 27, she had colon cancer.  Had her dad not undergone the genetic testing for Lynch, his daughter would not have undergone a colonoscopy.  Her dad saved her life because he agreed to a simple blood test.

Connecting with extended family and encouraging everyone to be tested is the only way to keep this under some semblance of control. Knowledge is power. In the case of Lynch Syndrome, ignorance is not bliss - ignorance is often fatal.

I HATE, HATE, HATE Lynch Syndrome.  I HATE that my husband has Lynch Syndrome.  I HATE that my kids might have Lynch Syndrome.  I HATE that Mike's siblings might have Lynch Syndrome. 

But, I am so grateful that we know about Lynch Syndrome.