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Colon Cancer at 39 years old with HNPCC

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Old 02-11-2011, 01:43 PM   #1
Join Date: Feb 2011
Location: Toronto, ON, Canada
Posts: 3
Zoey321 HB User
Colon Cancer at 39 years old with HNPCC


Hope someone out there can help me.

We found out this month the my husband's brother was diagnosed with colon cancer. It came as a shock as he is only 36 years old, and very healthy and athletic.

Upon this news I urged my 39 year old husband to get a colonoscopy.
The doctor detected and removed a polyp. After the biopsy it turns out to be adenocarcinoma (cancerous).

Their mother died of uterine cancer when she was in her forties.

The doctor says that they are a HNPCC Family (Heriditary Non-polyposus Colon Cancer or Lynch Syndrome) which makes them more genetically more prone to cancer of the uterine and colon.

Although the GI doctor who performed the colonscopy believes that he has completely removed the cancer from my husband, he is sending us to a surgeon for possible segmental or maybe even total resection of the colon as a prophylactic measure as there is a high chance of the cancer recurring.

What is the quality of life after either segmental or total colon removal?
Should we opt to monitor, go for partial reseection of the colon or have the entire colon removed?

I was wondering if anyone has been through a similar situation and can share some of your experiences with us.


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Old 02-12-2011, 08:26 AM   #2
Join Date: Feb 2011
Location: Oregon
Posts: 1
Sprung4Life HB User
Re: Colon Cancer at 39 years old with HNPCC

Hello -

I was diagnosed with a single colon polyp at age 38. I had been bleeding for about 2 years, but really didn't want to deal with it. After the doc biopsied it, he told me it was cancer. Being a single polyp, I thought "No big deal".

However, my doctor called me into his office later in the week and said "If I didn't know your family cancer history we could excise this polyp out today in my office and you'd be done with it. Unfortunately, because of your family's history, I believe you have "HNPCC". If that's true, and we don't remove your colon, this cancer will come back in a year and you will be dead."

Straight talk, kind of scary, but I appreciated his honesty.

My family has lots of cancer history, including mom's uterine cancer like your brother in law.

I ended up going up to Portland OR where my surgury was done at a Universtiy Medical Center. They took out my butt and my colon, giving me an ileostomy.

Fast forward 8 years - I've had issues, but I would say that my quality of life is 95% of what it was. Maybe 98%. I'm a strong man, lift weights, love to run, play music in a band, wrestle with my 3 boys.. life is fantastic.

Tell your brother in law that if he wants to have a great life - get it done.

Turns out that our family is the poster child family for HNPCC.

Best wishes - David S.

Last edited by moderator2; 02-12-2011 at 01:45 PM.

Old 02-12-2011, 01:06 PM   #3
Join Date: Feb 2011
Location: Toronto, ON, Canada
Posts: 3
Zoey321 HB User
Re: Colon Cancer at 39 years old with HNPCC

Hi Sprung4Life,

Thanks so much for your reply!

We are meeting with the surgeon next week to go through our options.

Thanks again!

Last edited by moderator2; 02-12-2011 at 01:42 PM. Reason: please do not ask members to post against the rules

Old 02-12-2011, 02:18 PM   #4
Senior Member
Join Date: Oct 2004
Posts: 194
Re: Colon Cancer at 39 years old with HNPCC

I have HNPCC Lynch Syndrome, have had endometrial cancer 1995 and colon cancer 2003. I had a right hemicolectomy in 2003 and have been NED ever since with no bowel problems as a result of having a section of colon removed. Lynch does not mean that the cancer will return within one year! that could only occur if some cancer remained in the colon. What Lynch does mean is that yearly colonoscopies are necessary due to the fact that a Lynch tumor can develop rapidly within 1 1/2 years to 2 years, versus the 7 - 10 years it takes for a random colon cancer to grow. With yearly colonoscopy, polyps can be removed before they have become cancerous or at the earliest stage of cc. Having the entire colon removed would eliminate the need for the yearly colonoscopy, but some people have had ongoing problems as a result of the total colectomy. Others do fine.

In addition, with Lynch Syndrome, all direct relatives need to be tested because you can have the mutation and never develop any cancer, but could still pass it on to offspring as it is a dominant mutation.

My brother tested positive for Lynch too, and he has not had any cancers, but he does follow the recommendation for a yearly colonoscopy, yearly urine cytology (renal pelvic/ureter cancers are also Lynch related), and upper endoscopy every 4 to 5 years (upper gastrointestinal cancers are also more likely to occur) For females there is a 60-70% lifetime chance of developing endometrial cancer and a 12% increased chance of ovarian cancer. Thus, women are told not to wait too long to have their families, and to have a complete hysterectomy by around age 45, which would eliminate the possibility of uterine or ovarian cancer.

I would give consideration to a total colectomy only if I developed a second colon cancer, which may or may not occur and in the meantime follow the preventive guidelines and surveillance recommendations.


Old 02-23-2011, 02:19 AM   #5
Join Date: May 2010
Posts: 9
positiveoutlook HB User
Re: Colon Cancer at 39 years old with HNPCC

Hi Zoey,

Last summer I found out I had colon cancer and it was due to Lynch Syndrome. I am only 29 and was 28 when I had my surgery. At first I was terrified when they told me how much they wanted to cut, but after getting over the shock I believe it was the right decision. You want to make sure you lower the risk of it coming back since people with Lynch Syndrome are very susceptible to getting colon cancers.

In my surgery the ileum, cecum, ascending/transverse/descending colon was removed. I have only about a foot left (sigmoid). It took a little while but my body has adjusted back to normal. In the beginning I had to go to the bathroom up to 5x/day and now it's only 2 or 3x/day but not with the same urgency as the beginning. The body adjusts amazingly with time and I am back to my regular life and going back to school

Good luck to your husband, you are doing the right thing! Please let us know how things turn out

Last edited by moderator2; 02-23-2011 at 06:43 AM.

Old 02-23-2011, 11:52 AM   #6
Join Date: Feb 2011
Location: Toronto, ON, Canada
Posts: 3
Zoey321 HB User
Re: Colon Cancer at 39 years old with HNPCC

Hi Positive Outlook,

Thanks so much for your reply and support! My husband and I are meeting with the surgeon next week. You have made us feel better knowing that things will go back to normal after the surgery!

Will keep you posted!

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