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Posts: 15
Joined: Oct 2011

I have a doctor appointment tomorrow and I find out if the genetic tests have come back and if I tested positive for Lynch Syndrome. This is genetic cancer syndrome in which you are predisposed to other cancers.

See my moms mother was diagnosed with colon cancer before age 50 and died at 53.

My mom was diagnosed with colon cancer at 48 and died at 50 with that.

I was diagnosed with endometrial cancer at 39.

With Lynch Syndrome, you have to have three generational markers in that you have to have to be diagnosed by the age of 50 with either colon or uterine cancer. Well, the doctor is over 90% positive that I have this but he took tissue samples during my hysterectomy on October 11th. There is no "cure" the option I have which I have to see the GI Surgeon tomorrow is that if the test is positive is a colonectomy. I had a colonostomy in Feb and he took out four polopys and 3 were precancerous already. I am going to go over to the colon cancer board to get some advice but I just wanted to say that I am very nervous tonight.

Thanks guys,


herdizziness's picture
Posts: 3642
Joined: Apr 2010

Hi, from across the boards (colon).
Since you were found to have polyps and three were pre-cancerous, removing your colon should not be a step you do next out of fear. Fear can be a powerful force, and not a good reason for removing your colon.
Colon cancer is a slow cancer, cutting our pre-cancerous polyps takes care of turning into cancer, they have been snipped out, they are gone, they cannot become cancer.
You had a Conoloscopy in February, they removed the polyps at that time. Your next colonoscopy should be in February of 2012 and that's just to ease your mind, you can go two years. When I had surgery in December they discovered I had grown more polyps since my September colonoscopy, so because my polyps grew so fast, my colonoscopy was set for one year later (this December). This will normally catch polyps before they become cancerous; and take it from me, a colon cancer survivor, if I thought I needed one every three months, I'd be hanging outside the onc's office waiting on it, but I'm happy with the one year wait. And after this colonoscopy I don't expect another for a few years. I've had almost half my colon removed during surgery, but it because that was where my tumor was hanging out, I was thankful they did NOT remove all of the colon, over two feet and you are looking at wearing a bag, and in your case probably for all the wrong reasons (fear).
So take a few deep breaths, have your onc schedule your colonoscopy for February of next year. I'm sure it's pretty darn scary for you with your family history, so I won't try and "there, there" you, but...I think you'll do fine getting your colonoscopy in February, if your doctor wants to do it sooner, and it'll give you more peace of mind, go for it.
And I'm so sorry about your grandmother and your mother, my condolences.
Winter Marie

Linda Lee
Posts: 7
Joined: Nov 2008

Hi Winter!

For those with Lynch syndrome, colon cancer is not a slow cancer but often a very aggressive cancer which can become life threatening in one to three years.

One of the hallmarks besides cancer polyps are flat cancers...so we have to have EXCELLENT gastroenterologists who are very attentive and who can recognize the hallmarks of Lynch syndrome (signet ring, mucous, etc.)

Warm regards,

Buckwirth's picture
Posts: 1271
Joined: Jun 2010

I am not going to be as rosy as the others. Your family history, and your diagnoses of endometrial cancer, are strong indicators of Lynch Syndrome, which can be a much faster growing variant than what most of us on the CRC board have.

You may not have it, only your doctor can say for sure, but you should treat this as serious.

Let me suggest you pay a visit to the United Ostomy Association: UOAA Forum

LIVESTRONG is another resource, and lastly, a site called My CRC Connections, where they offer one on one telephone support.

On a personal note, I had a colonoscopy within a month of my 50th birthday, all clean. Two years later I had stage 4 CRC, so I am not in the camp that suggests this is always a slow growing cancer.

Sorry to be so gloomy, and I do hope you find out tomorrow that you do not have Lynch.


abrub's picture
Posts: 2158
Joined: Mar 2010

I have a family friend, a long-term breast cancer survivor (dx'd ~1985) who has been having 6 month colonoscopies for over 20 years. She has new pre-cancerous polyps removed at EVERY 6 month colonoscopy. There is a certain condition (I don't know the details) where the polyps do grow quickly. However, she has avoided having her colon removed, and is still fine.

She may be being tracked at Memorial Sloan Kettering. I know that's where she had her mastectomy those many years ago.

If you are positive for Lynch, ask about the possibility of 6 month colonoscopies (and then make sure you always get them on time.) The prep is no fun, but a couple of miserable days a year in prep sounds far better to me than having a colonectomy.

Know your options - take a breather (albeit a short one) and get the info that you need.


Posts: 15
Joined: Oct 2011

Yes you can have frequent colonoscopies and yep if they are cut out they are gone but when you are pre-disposed to frequent polopys then I would say lets go with that. I went to the GI doc and he will do another colonoscpy early Feb 2012. IF there are more polopys and they come back with anything wrong pre-cancer or God forbid cancer ya it is coming out in a heartbeat.
My husband and I have talked about this in length and then some. My grandfather is having a fit.
The doctor said I have a choice, he can either "hook" everything back up and I will go about 10-12 times a day BUT I will have little to no notice that I have to go to the bathroom so you could say at 39 I would wear a diaper for the rest of my life or he could totally take out everything and I would have a small bag on my stomach that is contained.

I am or used to be a CNA and had to change them and clean around the stoma and so I do know all of the stuff that goes with this (smells) everything!

I really don't want either but I don't want to DIE and in the end that is what I am trying to prevent everyone has their comment about what I would WANT you know what I want is a nice cozy little life to were cancer is never spoken or nothing in life goes wrong but doesn't happen does it!

Test for Lynch was not back yet

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HellieC's picture
Posts: 524
Joined: Nov 2010

Having a bag is not the end of the world. I had to have a colostomy to deal with my second recurrence, which had wrapped itself around my sigmoid colon. To be honest, although I would not choose to be here (well, who would?), it was the only chance I had of curative treatment and I was not going to turn that down! I have managed with it OK. It doesn't stop me doing any of my usual day to day activities, or going on holiday etc. (we went on a cruise 8 months after my surgery - it was marvelous). I can wear pretty much all the clothes that I did before (I just avoid anything really clingy over the tummy area - but, as I have a bit of a generous tummy I always did anyway!). I had to buy a slightly bigger purse (great excuse!), as I always carry a spare pouch etc. in a small makeup bag, wherever I go, so I am never "caught out" anywhere. It takes me about 10 minutes each morning and evening to deal with it and works easily into my normal bathroom routine. Potentially, it is reversible, but I am realistic and know that there is no point in thinking about it at this early stage.
I guess that all I'm trying to say is if you go down the "stoma route", there is light at the end of the tunnel - and it's not an oncoming train!
Wishing you all the best

Linda Lee
Posts: 7
Joined: Nov 2008

Hi Everyone!

I was diagnosed with colon cancer in 2007. In 2001, we suspected hereditary cancer ran in our family, however my physician didn't give me a test. He also didn't feel I needed a colonoscopy. I ended up with Stage 3(c) cancer after finally receiving one and I am four years cancer free, at this time.

I haven't hit the five year mark, because it really doesn't matter. With Lynch syndrome, we have a high risk of getting second, third, fourth primary cancers, so that is why we are screened every year for cancers and precancerous growths, polyps, tumors are removed before they become life threatening. So, there is really no remission for us...

The Amsterdam criteria for determining qualification for a genetics test is often called the 3-2-1 rule. THREE relatives who have each sustained ANY Lynch cancer -- TWO of the three directed related to the third -- One under the age of 50 Only fifty percent of those with Lynch syndrome are identified with that criteria...look for young and early cancers, look for endometrial and colon cancers and ask doctors to test the tumors of colon and endometrial cancers with microsatellite instability testing and/or IHC testing. It has become the accepted guideline and standard.

Most of those who are genetically tested and who have received ongoing surveillances than those who have not. My brother has had polyps removed every year...and it has been a lifesaver.

To learn more about Lynch syndrome go to www.lynchcancers.com . Thousands of individuals who are diagnosed with it are organizing to protect families and save lives. Join the FACEBOOK page and the many who are standing up! March 22, 2012 is Lynch Syndrome Public Awareness Day--get involved! Contact info@lynchcancers.com .

In the meantime...remember -- our cancers are mostly very treatable and we are luckier than anyone else who gets cancer...because it is found early!!! So, get tested if you are at risk...

Live well and stay well!

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

Thank you for the info on Lynch.

My oncologist wants me to undergo testing because my tumor came back with msh2 AND msh6 malfunctioning. Unfortunately, I cannot get an appointment for a couple of months.

I am stage two but grade three. Was your cancer high grade? I am just wondering if there is a correlation to Lynch and grade. I am so thankful that my doctor has been so proactive with me.

It is conforting to read a post from someone with Lynch, I felt sort of doomed when my doctor told me it is a possibility. Now I am beginning to realize knowledge is power, not only for me but for my siblings and children.

Thanks again,

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