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Genetic Testing -- Lynch Syndrome

Always Hopeful
Posts: 234
Joined: May 2010

Hi all,

My doctors recommended I have the test for Lynch Syndrome because of my family history and my UPSC. Blood was drawn and sent out this past Friday, the 22nd. I was wondering if others have done this and how you handled the results if you were positive for it.

Thank you for anything you can share regarding this.

Peace and hope, JJ

Posts: 1
Joined: Nov 2010

In response to your question I offer my story: I am 32 and have known now for over 10 years that I am Lynch Positive. My dad was dx at 27 with colorectal cancer and was the first to be identified as a Positive carrier. They have since put together most of his family tree with more 'members' being identified every year. Knowing I'm positive has directly impacted my life, because knowing that more than likely I will in some way battle the BIG C is always at the back of my brain. But knowing is half the battle - I can at least keep all my tests in order, making sure I get my colonoscopies yearly, my PAP's yearly, mamograms when the time comes, etc. I'm currently researching whether to have a profylactic hysterectomy. As of yet I've never had a PAP come back with positive results, nor a colonoscopy come back with polyps or anything else abnormal. The thing about Lynch is typically there is more than one primary site of cancer - so if you know you are positive then you can do your testing and research and keep one step ahead of that little nasty gene.

That being said, as I near the age of when many of my cousins have already been diagnosed with one or more cancers, I am starting to wonder when is my number going to be called. I don't want to deal with chemo or hearing the word CANCER in an office with a doctor - but I know it's a probablity I must live with. I now understand why many years ago my dad said if he'd have known he carried this gene, he'd have never had kids.

I wonder if by now you have heard your results and how you dealt with the news, one way or the other?


Always Hopeful
Posts: 234
Joined: May 2010

Thank you so very much for your reply. I have not yet received the results of the blood test. I was originally told it would take three weeks and am now wondering if the doc is just waiting for my next visit to discuss the results. If that is the case, then it is leading me to think that the news is not good. I know I am letting my mind run away with me because, for the most part since my diagnosis, the news I've received after test/scans has not been good.

You have truly handled this in a very proactive and logical manner. However, the fear that you have lived with because of being positive must be so overwhelming, especially as you find out about your cousins. My heart goes out to you...having to handle such news since you were 22 is more than many could ever handle.

My main concern regarding the results has to do with my daughter. She is 31 and had a miscarriage in May (her first pregnancy). Less than a month ago her husband decided that after 3 years that marriage wasn't for him. So she is now dealing with getting a divorce. She's had three major blows this year...my dx, the miscarriage and now divorce. Having children has always been one of her life's goals...having to consider a prophylactic hysterectomy is not something I want her to have to deal with now or ever.

The best thing for me to do is to contact the doctor tomorrow. I can even see her if she wants since I am going for chemo at 3pm.
Again, thanks for sharing your experience. I will let you know about the results when I receive them.

I wish you much peace, comfort and hope with all that is ahead of you...JJ



UPDATE: Genetic testing results not received yet by doctor.

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