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HNPCC & Colon Cancer

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Old 10-10-2010, 03:08 PM   #1
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Join Date: Jan 2010
Location: Portland,
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ashnw HB User
HNPCC & Colon Cancer

This may seem like a long story, I will try to make it short and of course ask for advice.

My dad was diagnosed with colon cancer when he was 35, doctors then told my mom he would not survive. He beat all odds and survived and has recently been having symptoms of colon cancer, his doctor said he has HNPCC. I made that as short as possible.

I am 22, I know that I have to have a colonoscopy no later than the age of 25,I also have a 50% chance of having HNPCC, which I know for me as a girl can cause ovarian cancer, etc. To find out if I do have HNPCC I would have to do genetic testing.

So, there is some background, my main question is, I am going into my primary care physician this week to sort of discuss these types of things and I have been reading up for the past year on a lot of this because I do not want to go through what my dad had to go through, I want to just live a healthy, normal life. I have read in the past about colectomy surgery. My doctor informed me that it can be done as a preventative method and that I would probably qualify given my Dad's situation. Has anyone had this surgery? Any information on it? Advice? It is not something I plan to do right away, it has been something in the back of my mind though.

Any help, advice, thoughts, anything would be appreciated!

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Old 10-11-2010, 05:47 AM   #2
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Join Date: Oct 2004
Posts: 194
Re: HNPCC & Colon Cancer

Has your father developed a second colon cancer? The argument for colectomy for Lynch Syndrome (HNPCC) is that you can have several separate colon cancers develop over a lifetime unless the entire colon is removed via total colectomy. Has your father undergone genetic testing to determine if he has HNPCC? If so, then your blood just needs to be tested for the same mutation to determine if you have inherited it.

Remember, just because someone has Lynch Syndrome does not necessarily mean they will develop a cancer. I am 64 and have had two Lynch Syndrome cancers, 1995 endometrial and in 2003 colon. My brother age 61 also has Lynch Syndrome but has never had any cancer. However, we both follow the MSKCC protocol, undergoing yearly colonoscopy, urine cytology screening and endoscopy every 4 or 5 years on a preventive maintenance basis.

When I had the genetic counseling at MSKCC they recommended a colectomy, but I declined, my thinking being that I am being closely followed and if I do develop another colon cancer, at that time I would probably opt for a colectomy. A colectomy is not without its problems in terms of control and frequency. Some people adjust well to lack of a colon, but some may have ongoing problems. With yearly surveillance, a colectomy would not be necesssary as any developing colon cancer could be caught at a very early stage, or while still a polyp, and then a decision made as to taking the radical step of a colectomy can be decided.

As a female, if you have Lynch Syndrome (HNPCC), then there is a 70+% chance of developing endometrial cancer, so the usual recommendation is yearly uterine ultrasound and endometrial biopsy. However, it usually doesn't develop until one's 40's or 50's, so completing your childbearing earlier rather than later would be desirable. After completing your family, then a preventative total hysterectomy (TAH BSO) would be performed as it will also prevent the development of ovarian cancer, since there is a 12% chance of HNPCC females getting ovarian and ovarian usually doesn't have any warning symptoms until it is quite advanced, whereas endometrial at a very early stage will often cause bleeding leading to its prompt detection.

There is also a small increased susceptability to other gastric, renal pelvic, pancreatic and brain cancer over that of the random population.

I hope this has answered your questions, if you have any additional ones, just post them.

Lynch Syndrome (HNPCC PMS2 mutation)
2004 ADH - tamoxifen
2003 Stage III colon cancer - right hemicolectomy 6 mos. chemo
1995 Stage I Endometrial cancer - TAH BSO

Last edited by LESLIETOO; 10-11-2010 at 07:00 AM.

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Old 11-25-2011, 02:48 AM   #3
Join Date: May 2010
Posts: 9
positiveoutlook HB User
Re: HNPCC & Colon Cancer

Thank you Leslie, this is really great information. I was 28 when diagnosed with colon cancer, but thankfully we found it in stage 1 due to an early colonoscopy screening. I am on the fence about having a preventative hysterectomy especially since I'm not sure about having children yet. I went back to school so getting pregnant at this point is not an option.

Is it true that getting pregnant can activate cancer in a person that has Lynch? I do want children but had an aunt (with Lynch) that was diagnosed with cancer during her pregnancy. She chose to carry out the pregnancy instead of terminate and undergo treatment and now is deceased. Things like this really scare me. I want children but don't want to do anything that would raise my risk of developing more cancer. Getting pregnant for another 2 years is not an option right now as I am in school getting my RN so I have some time to think about it. What are your thoughts, do you have any information you could share?

Oh and apologies to the original poster for "hi-jacking" your thread but I see you haven't posted anything back so I thought it would be safe to post to this thread.

Old 11-25-2011, 06:58 PM   #4
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Join Date: Oct 2004
Posts: 194
Re: HNPCC & Colon Cancer

I have not heard that getting pregnant can activate a cancer. Were you tested for Lynch syndrome? Are you five years out from your cancer diagnosis? Colon cancer is considered cured and unlikely to return after five years. However, with Lynch, there is always the likelihood of another cancer developing. This would be due to the genetic mutation that exists in the person and have nothing to do with whether there is a pregnancy or not. What sometimes happens is that if a person has a preexisting but undiscovered cancer that becomes symptomatic during pregnancy, oftentimes the symptoms are written off as being pregnancy related and no further investigation is done, until after the baby is born when the symptoms persist.

As far as having a hysterectomy, I don't know your current age, but endometrial cancer doesn't usually develop until the late 40's or later. As long as you are followed and and are having regular pelvic sonograms and endometrial sampling once or twice a year, there need not be any rush to have the hysterectomy.

Lynch Syndrome PMS2 mutation
2003 Colon Cancer Stage III 2+ nodes
1995 Endometrial Cancer Stage I

Old 12-10-2011, 07:42 PM   #5
Join Date: Dec 2011
Location: Edmond, OK
Posts: 1
caw3455 HB User
Re: HNPCC & Colon Cancer

I found out that I had Lynch Syndrome and had an 80% chance of getting colon cancer in February of this year. I got a colonoscopy 1 week later and I had a pre-cancerous polyp the size of an egg.

I am 29 years old, and was 28 at the time and had the option of getting a portion of my colon removed where the polyp was or my entire colon and not ever have to worry about getting colon cancer again. Now, a total colectomy is a little more serious than just a section of it but I decided to just go for the total colectomy.

My surgery was about 6 hours and I stayed the night in the hospital for 2 nights. It was rough post surgery just like every surgery. I never had to have a collostemy bag or anything. There are situations where people do have to have them temporarilly, but the can reverse them. My surgery was liproscopic and I have a 2 inch scar on the right side of my stomach and thats it. My life is completely back normal less than a year later.

If you have any questions please ask me I'm here to help!

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