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Lynch Syndrome

Posts: 6
Joined: Jan 2012

Diagnosed as Lynch Syndrome carrier after doing genetic testing.
I suspected it , after reading several articles on the subject due to my family cancer history.
I have three adult daughters and asked them to have the tests done. It is a simple blood test.
One tested positive, the other negative, the third is still waiting to have results from the test.
It was scary for them to go for the results, but we decided that it is better to have the knowledge.
As a result, my daughter that tested positive, is only 38, but is doing regular yearly colonoscopy tests, as well as Paps and sonograms every
Six months. She is also considering a hystorectomy by the time she is forty. I wish I had known when I was her age, I would not have Cancer now

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


Sorry about the diagnosis, but I do think it's better to know as well.

I find out my results on Tuesday, although I was told to expect a positive. I am dealing with the information better, after I've had time to process it. I, too, wish I would have known. My doctor did not perform a biopsy for 8 months because I had no risk factors (cancer is with my extended family that I am not close to). The lack of knowledge nearly killed me, if it hasn't already. Stage 2 (maybe 3 but my doctor won't up my stage based on PET scan) Grade 3. I'm only 38 too, which made my doctor think it wasn't cancer.

On the bright side, I have contacted my extended family. I have 5 cousing who have had endometrial cancer. So far, that is the only cancer they have had. The men get colon cancer. Perhaps my pattern will follow and after I beat this one, I won't have to undergo treatment for another type.

I do feel badly every time I look at my boys. We won't talk to them about it until they are 18. They are only 10 and 3 now. I am just hoping medical technology keeps getting better. Who knows, maybe I'll be negative and won't have to worry.

Do you worry about medical discrimination at all? I do for my boys. I worry that somehow, if Lynch is in their medical file, employers may find out and their future will be even tougher than just living with this diagnosis. Maybe I am being silly.

Although I'm sorry you have Lynch, I'm glad there is someone on here in the same boat...

Best regards,

Posts: 2
Joined: Mar 2012

In the same boat...

When I was first diagnosed a little over one year ago, I was in a panic! I had just had a complete hysterectomy due to endometrial cancer and then...Lynch! I laid awake at night imagining horrible scenarios. I could hardly keep from crying during the day. After a consultation with an oncologist who specializes in the treatment of genetic gastrointestinal cancers, I began to gain some perspective.

Remember when you read the classic study that says if you have Lynch you have a 20 – 80% lifetime risk of cancer, it also means that you have an 80 to 20% chance of NOT getting cancer! Not everyone who has Lynch gets cancer. *

Remember that one study shows that Lynch carriers who get regular colonoscopies have a 10 year mortality rate that is the same as non Lynch carriers.

Remember that the CAPP2 study has demonstrated that people with Lynch can reduce their chance of getting colorectal cancer by 60% (http://www.capp3.org/our-blog/capp2-paper-released.aspx).

This researcher (http://www.medscape.com/viewarticle/745533?src=ptalk) believes that the overall cancer risk for Lynch syndrome carriers may be less that the studies are currently showing. (the ******** in the above link should be deleted and replaced with the letters: scr. I can't get the link to show correctly!!)

*Don’t you wonder why some Lynch people get cancer and some don’t? If your mismatch repair genes are not functioning adequately, how have you lived this long? I don’t have the space here to discuss this at length but I posit these questions for you to consider. Maybe other systems compensate for the defect. Maybe it has something to do with lifestyle…smoking vs not smoking, alcohol consumption, stress, diet. It behooves us to not scare ourselves to death with the possibility of cancer but rather to begin to consider how we can take better care of ourselves to increase our odds of avoiding this disease!

Rachelle, I hope that your results are negative! If they aren't, don't lose hope!

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

I received my positive diagnosis today.

I feel okay about it. I'm an otherwise healthy person and will just get my screenings. I am going to live like I am not positive instead of worrying about getting a new cancer.

I guess I need to get rid of this one first.

Thank you for the positive outlook. I admit, it was hard to find one at first. Strangely, I am at peace with the whole thing.

Thanks again,

Posts: 6
Joined: Jan 2012

Your positive attitude Rochelle is the best possible answer. Also knowledge is key, I try to read up on new info coming out regarding my diagnosis, You are the best advocate for yourself, keep talking to your doctors asking as many questions as you can.
Good Luck, Penny

gdpawel's picture
Posts: 538
Joined: May 2001

Patients with the DNA repair deficiency known as mismatch repair or Lynch Syndrome have an inability to respond to DNA damage. This failure leads to mutational events that can result in cancer. On a "positive" note, the Lynch Syndrome patients may have a similar attribute that can render them hypersensitive to chemotherapeutics.


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