Lynch syndrome Community Group

Non-polypopis colon cancer

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QuimbyRoo 12/17/2013

I was recently diagnosed with colon cancer which appears to be isolate in the cecum but I won't really know until surgery. I am still waiting on the test results to determine if I have Lynch Syndrome, but I'm trying to decide (if I am positive for Lynch) if I want to go with the right colectomy (about 30% of the colon removed) or the subtotal colectomy (about 90% of the colon removed). The doctors all seem to suggest the subtotal colectomy if I am positive for Lynch, but I'm a little hesitant to go with such a big surgery as opposed to having the right colectomy with a more aggressive screening process (colonoscopies at least annually) and potentially chemo as well. I know the subtotal colectomy reduces the overall risk that colon cancer will return, but there still is a residual risk and it seems like regular screening is an effective approach to identifying and removing polyps before they develop and spread to a more advanced stage of cancer. In my mind, if the aggressive screening process can lower the overall risk that I will have an advanced stage of cancer to a level similar to the subtotal colectomy, I would prefer to have the simpler surgery up front and not deal with the bowel issues involved with the more complex surgery.

Any thoughts and/or feedback would be appreciated. By the way, I am a 37 year old male with no significant family history of which I'm aware.

deleted_user 12/17/2013

I certainly don't want to tell you one way or the other as the final choice is yours. With that said, my mother has lynch (me too) and she was diagnosed with stage 2b colon cancer 12 years ago! She had surgery to remove the tumor but kept all of her "parts". She has yearly colonoscopies and has not had any reoccurrences. She is taking a children's asprin daily and hasn't even had a polyp in two years. I am not on an asprin regiment and at 31 they found a precancerous polyp during my last colonoscopy. I believe that if you get screened yearly and take the asprin, you might never have a reoccurrence. Just my two cents! Good luck with your decision. It certainly is tough no matter which way you go.
Christie

deleted_user 12/17/2013

My brother and I are positive for Lynch Syndrome and have both had colon cancer and surgery and chemo. At the time of our surgery we were both 30 years old and didn't know we had L.S. We both had resections and no colostomy. My brother has been cancer free for 28 years and I have been cancer free for 19 years. My opinion is to deal withthe immediate situation and worry about later....later. Having said that, each situation is unique and everyone handles things differently.

Megan50 12/17/2013

My husband had the subtotal colectomy. No ostomy bag. His thought was he only wanted to go through it once. I think you just do what you feel is best. There is no right or wrong answer. You deal with things either way.

deleted_user 12/17/2013

It is an agonizing decision. I went with a colectomy with ileorectal anastomosis and am glad I did. Yes, I now have looser bowel movements, but it's nothing I can't handle. I like the peace-of-mind that came with removing my colon. My father & sister kept their colons and unfortunately they have both passed away. (My father had yearly screenings, too) You are doing the right thing by talking to people and getting input. Good luck with whatever you decide:)

QuimbyRoo 12/18/2013

Thank you all for your responses. I hear this decision is the toughest part of the process. I should hear back from my Lynch test results by the 24th and have surgery planned on the 27th, so I'll keep you posted.

This is really a great group, I wish I came across this earlier, but I'm glad I finally found it.

deleted_user 02/07/2014

Quimby, I hope it went well, whatever you decided to do. I haven't checked this site in a while so just saw this after you made your decision. I'm just offering this for other people who may face the decision in the future. I was diagnosed with Stage 1 colon cancer and Lynch Syndrome (MSH-2 mutation) in the same month in 2009. At the time, I decided to have only a right hemicolectomy even though my surgeon recommended a subtotal colectomy. In 2012, after they found a polyp that was on its way to become cancerous during a colonoscopy, I decided to have the subtotal colectomy. Everyone is different, but my quality of life is actually BETTER after the subtotal colectomy. I take Imodium every day and 1 wafer of Metamucil with breakfast and dinner. I can eat anything I want and do anything I want. I do a lot of outer sports - no problem at all! I can do a half marathon or bike for several hours without worrying about being near a bathroom. If someone had told me this before the subtotal colectomy, I wouldn't have believed it based on all the scary story I read on the internet. I can't say I got here right away. It took about a year, but only the first couple of months were challenging. I hope this helps.

QuimbyRoo 02/07/2014

I was one of the lucky ones who had a negative result on the Lynch testing, so that made my decision easier to go with the right hemicolectomy (about 20% removed). I will still keep on a pattern of regular screenings and I'm hoping that having my Celiac Disease under control with a gluten-free diet will help prevent the extra irritation going forward.

Thank you for your response, there was about a month there where I was heavy into researching the recent statistical studies and test results, so I look forward to sharing what I found with others that may join this board.

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