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Anyone here who tested positive for Lynch Syndrome post uterine cancer?

Posts: 743
Joined: Oct 2008

Hi, I am here looking for anyone who may have tested positive for Lynch Syndrome and opted to have a total colectomy? I am a 6 year survivor of uterine papillary serious cancer. I tested positive for Lynch Syndrome. I have a stricture in my Sigmoid colon presumably due to radiation injury. I am facing yearly colonoscopiies to screen for colon cancer that I have an 80% chance of getting. I have chronic abdominal discomfort related the stricture. My surgeon has encouraged me to consider total colectomy for all of the aforementioned issues. 

Anyone here in a similar situation or have already had the colectomy? I'm specifically interested in what your quality of life is following the colon removal and pros and cons of taking this step. 

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

But I'm hoping someone on this board can help you with it.


Ro10's picture
Posts: 1579
Joined: Jan 2009

I am so sorry about the problems you are having.  I think they test for Lynch syndrome if your Cancer is found when you are less than  50  years old.  Most of the ladies here were over 50 when diagnosed.  Have you checked on the colon board.  

Where is the stricture located that you need a total colectomy.  That seems really drastic.  Having pain all the time can not be good either.  I am so sorry they feel the problems are related to the radiation treatments.  No one knows for sure what the long term effects of the treatments will be for some.

i know Helen has a colostomy.  Maybe she will  be able to give you some advice.

good luck in making your decision.  If it were not for the pain I would opt for the yearly colonoscopies until something showed up.  What about monitoring with the marker for colon cancer (CEA).  

TAyers's picture
Posts: 86
Joined: Aug 2012

Hi Deanna,

I had to request the lynch testing through genetics. My mom passed of colon and had a hysterectomy because of precancerous conditions. Mine came back negative. This is  a hard decision to make, because either outcome is not easy to deal with. God bless with your decision making. 

Kaleena's picture
Posts: 2036
Joined: Nov 2009

I was diagnosed in 2005 with Endometrial Adenocarcinoma at the age of 45.    Just this year (2014), they went back and tested my original finding to see if the sample tested positive for Lynch Syndome since my maternal grandfather had colon cancer and I got endometrial under the age of 50.   I didn't realize that they kept the samples that long.   My test came back negative.   However, I do get periods of severe abdominal pains to the point I end up vomiting.  One of the reasons for me being tested for Lynch Syncrome.     My last incident of this was in June and if it happens again, I am to go to the ER for an x-ray to see if there is a partial blockage.    I have been dealing with this since 2011.   My recent PET Scan indicated that I have sigmoid diverticulosis without acute diverticulitis.   

However, I did end up with a blockage in my ureter caused by my Brachytherapy radiation restricting the flo to my left kidney which caused hydroureteronephrosis and my kidney to shrink a bit.  As a result, I now have a stent in place which needs to be changed under anesthesia every three months.

Its annoying having to have a stent replaced every three months (which includes a PCP visit and certain tests every three months), but it is better than losing a kidney altogether.  

I am sorry that I cannot help you with your specific question but hope my response helps you in some way.

My best to you. 


Posts: 743
Joined: Oct 2008

Thank you ladies for your comments. This is a huge and difficult decision. I am 45 years old and facing a lifetime of yearly colonoscopies. At the risk of sounding ungrateful, this is a distressing thought. I am truly thankful to God for surviving this cancer! The colectomy sounds appealing as it would mean no further colonoscopies... but drastic, yes. If there weren't so many unknowns and I could be sure of the quality of life after....  Right now I choose to wait, but with each colonoscopy, my resolve to stick with conservative treatment becomes weaker.

Posts: 574
Joined: Feb 2013

I know what you mean.  The prep for the colonoscopies is a real problem for me.  One time, I was raw for a week afterwards.  My colonoscopy came out fine, but the following year, I was diagnosed with my UPSC.  I had a small metastasis to my small intestine (among other places) which had been causing diarrhea daily before work (one doctor said I had irritable bowel, but it stopped after I had my surgery).  It's too bad the colonoscopy couldn't go further up in the digestive tract.  I might have been diagnosed sooner.  

I would think there would be a lot of inconvenience having to empty a colostomy bag, especially in a public restroom, and probably a lot of risk of infection around the seal for it.
But that inconvenience would probably be better than the alternative.  I wish you luck with your decision.  

Posts: 13
Joined: May 2014

Yes, I was diagnosed with Lynch Syndrome when I had my hysterectomy in June 2014 (I'm 55).  I've had colonoscopy, endoscopy and special urine testing.  The current recommendation is colonoscopies every other year rather than annually (this from the gastroenterologist who did my screenings in November).  The urine screening is annual.  I can't remember the endoscopy but I think that was every 3-5 years.  Stomach cancer isn't very common in the US even among those with Lynch syndrome.   Be sure to talk to your doctor about aspirin therapy - while it doesn't work with the rest of the population, aspirin cut colon cancer risk by 50% in those with Lynch Syndrome.

I would recommend that you visit the boards specific to colon cancer for the best information on post-colon removal issues.  Keep in mind that those who have had the worst results are the most likely to post since those who had no problems at all eventually drop off after a year or two, not really needing the support.  My uncle had a colonectomy and while that was 5 or 6 years ago, I know he continues to have issues with diarreah (sp).  I wouldn't know what to recommend to you, but I'm pretty resistant to removing healthy parts that aren't already causing problems. Repair is usually your better choice.

Shell bug's picture
Shell bug
Posts: 76
Joined: Nov 2011

I have Lynch Syndrome as well. I've heard a rumor about a pill for the prep coming. Has anyone else heard that? I would get several opinions about colon removal. i am frightened of it.


best wishes,


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