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HNPCC Lynch Syndrome

Sigma34's picture
Posts: 207
Joined: Jul 2009


I originally came onto ACS as I was recently diagnosed with colon cancer in June. I'm writing to see if anyone here as Lynch Syndrome?

Thank you,

lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

There are several women here that tested positive for Lynch Syndrome. I didn't have any family history of other uterine or rectal cancer, so my oncologist poo-pooed me getting tested for it. I wanted all kinds of tissue assays and molecular testing that I didn't get. The new head of Women's Health at Geisinger, (where I get my treatments) told me that he will bring all of that new technology to the way they treat cancer there. I guess I got my cancer a year too early for the changes that are coming.

Posts: 743
Joined: Oct 2008

I tested positive for a mutation on the MSH2 gene. I was diagnosed with Mixed Endometrial and Uterine Papillary Serous Adenocarcinoma in September 0f 2008. My brother was diagnosed with colon cancer in 2002. Happily, we are both cancer free at this time!
Do you have Lynch Syndrome? I hope that this post finds you healthy and cancer free! Do you have siblings or other first degree relatives with colon or uterine cancer? There is some interesting information about Lynch Syndrome on the MD Anderson website. They are finding other types of cancer that are being linked to Lynch Syndrome... great news, huh?!!! Sometimes I think we can know way too much.

TiggersDoBounce's picture
Posts: 413
Joined: Oct 2009

I actually had an appt with the Genetics Department at the Dana Farber in Boston today to talk about this.

Since my family history has a large amount of Cancer in it, my Oncologist encouraged me to meet with them. Wow, she sketched out my entire family tree (and believe me it took like 2 hours) from Grandparents thru Cousins....she explained all the Biology behind the DNA structures and how they test for this...very interesting.

She didn't think immediately I had the syndrome, but is proceeding forward first doing testing on my tumor tissue samples from my Hysterectomy in October. She said it would take about a month and if that yielded criteria that is commensurate in a positive Lynch Syndrome diagnosis, we would then discuss and possibly move ahead.

I asked her, assume it is positive, what treatment change would that yield for me? She stated it would dictate yearly Colonoscopy's and also Skin checks for Melanoma. Apparently not only is Colon Cancer linked to Endometrial but also a type of Sebaceous type Melanoma.

I learned alot and await information from her on my tissue testing.


Sigma34's picture
Posts: 207
Joined: Jul 2009

Hello and thank you to all who responded to my post.

I was tested and should be getting results back next week. I do have A LOT of family history with cancer and I was diagnoned with colon cancer at 41. I had surgery in June to remove my lower colon.

I will let everyone know how the results turn out and based on those what direction my journey might take.

Thanks again for responding and all the information the three of you gave me. :)


Posts: 2
Joined: Feb 2010

Hey Christine and other fellow HNPCC carriers. I had my genetic counseling and testing last fall after tracing a family history of various cancers. In my 30's I had a complete hysterectory following the discovery of endometriosis. Then, last year, at age 60, I was diagnosed with a sebaceous carcinoma which I had removed using the MOH's testing procedure. That has placed me in a sub category of HNPCC called Muir Torre. I have had a round of doctor's appointments with a variety of doctors just to be proactive. I know I have an increased probability of colon cancer (my father had cc four times) and I had an uncle die from brain cancer. But I find myself facing each day as an opportunity for life and appreciation of the wonderful blessings I possess. I hope all of you are able to do the same in this crazy world.

Posts: 1
Joined: Mar 2010

I discovered three years ago that I inherited a mutated MSH6 gene--Lynch II Syndrome. It leads to multiple primary cancers. My mother survived breast cancer, endometrial cancer, colon cancer, and skin cancer between the ages of 37 and 82. I've survived endometrial cancer, and thanks to aggressive monitoring, last summer my physicians found malignant cells in one of my breasts before they became cancerous. The genetics counselors told me there was no scientific evidence linking breast cancer to Lynch Syndrome, but physicians have told me patients with Lynch Syndrome have a higher-than-normal risk of developing breast cancer, and a European study found a relatively rare version of the MSH6 mutation that does lead to hereditary breast cancer. The risk of developing colon cancer is relatively high, but I'm hopeful that it too will be caught at an early stage.

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