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.


  1. I want to start off my saying thanks for the article. I myself had colon cancer at 29 where half of my colon was removed. my mother then around 3 years later was diagnosed with kidney cancer and it had spread by the time we caught it. I am saddened to say we lost her in 2010. So Now I am 35 and have to try to explain all this to my moms side of the family hoping and praying its not to late. I know I need to get all 3 of my kids tested and I am terrified. I am so numb right now wiht the thought that cancer and appear and take me from my kids or that worse I may loose one of them. There is no support groups here and really noone to one help me with my questions of thoughts do you know of a site or discussion board?

  2. Joyce,

    When my husband was diagnosed with Lynch Syndrom there was quite a bit of denial from extended family. The fact that nobody else ever had colon cancer made it seem as though this was just a fluke for him to get it so young. We are still frustrated that his siblings have not been tested, but also have come to the realization that as adults they have to make their own decisions. As much as we may want them to be tested, we obviously can't force them.

    For me, knowing Mike has Lynch gave us a sense of power over it. We know what we're dealing with now and can be as proactive as possible to protect Mike and our children. Because our kids are young, we won't have them tested for quite some time. After discussing with professionals the pros and cons of testing early we have decided to wait for now. Even if they are positive for Lynch, there is nothing different screening-wise that we would be doing until they are older anyway. That said, there is a part of me that would like to know if we can put that worry aside. I'm not sure there's ever one right answer.

    Until Mike was diagnosed we had never heard of Lynch Syndrome and to my knowledge there really aren't many in-person support groups. We found to be really helpful. Not everyone has Lynch, but many members do. Even if they don't have Lynch, they are all people who were diagnosed with colon cancer at a younger age.

    One of the things we've learned is that colon cancer caused by Lynch behaves quite differently than your general run of the mill colon cancer. While the tumors are more agressive, they tend to stay a little more contained. Finding the positives even in something as scary as cancer has been helpful for us

    I don't post nearly as often as I used to because life really does go on. We are always aware of Lynch Sydrome and how it has changed our lives, but it doesn't rule us and we don't live in fear because we know we are doing all that we can to be proactive.


  3. My husband had colon cancer 10 years ago and was tested at that time. All results came back negative. Fast forward 6 years and he's diagnosed with right ureter cancer...sure cure, remove ureter and perfectly healthy kidney. Fast forward 4 years and he's diagnosed with stage 2A stomach cancer and now a small tumor has shown up in the left renal pelvis which they have removed but removal of left ureter not an option due to that being his only remaining kidney. In between all this, he's had two bouts with sabecous cell gland tumors at which time he was retested and this time came back MLH1....Lynch Syndrome. Our only son was tested two months ago and he too is positive. My heart is totally broken.

    1. This is all still so new for you. We now have three years behind us knowing Mike has Lynch. We still don't know about our kids. Knowing now about your son is so important. Knowing he is Lynch positive (as much as you hate that he is) gives him some protection. He can stay one step ahead of things. Colontown is a "secret" facebook group that has provided me with incredible support and new friendships. People in Colontown are only there because they have requested to be there. Lynchville and Carepartner Corner are two of the "neighborhoods" I participate in. You aren't alone even if it sometimes feels like it. If you are interested in Colontown, please search Erika Hanson Brown and let her know how you found out about it. She is the director of the group and works hard to keep it a safe and private place.

  4. I know this post is 2 years ago, and not sure if anyone still follows it. I am at 26 y/o female with Lynch syndrome. My father passed away after a 10 year battle with various cancers (colon,lymphoma, skin, lymphoma again). I have 1 child and will hopefully have one more. I look at my diagnoses as a good thing, not a bad. I can be prepared and get my yearly screenings. My children will be prepared and get their screenings until the point they decide if they want to be tested. If I had not been diagnosed my children and I would be in the dark. Now my children will know to get early colonoscopies and any polyps will hopefully be caught before it is cancer.