Lynch Syndrome

mrscrain

Hello..since I am so new to the site and have so many questions, I'm going to start with this one..Can I get some feedback from anyone who has been diagnosed with Lynch syndrome..basically what has been your path? I tested conclusive with the genetic testing all the way to the final one and then it was inconclusive. But the doctors say it's best to consider me as having it than not. So I chose a complete hysterectomy as precaution with strong medical advice. Just over 3 weeks ago I had to have my gallbladder removed because it tested out at a 2 on the hida scan. There was no cancer involved. But of course the anxiety was very real prior to surgery. I guess that since I know the reality of reoccurence with Lynch is almost inevitable..it leaves me wondering, what about me? Just curious if anyone else out there has been even close to my situation. Thanks!

lp1964

I don't know...

...anything about this condition. I joust wanted to wish you my support and the best possible outcome.

Laz

mrscrain

lp1964 said:

I don't know...

...anything about this condition. I joust wanted to wish you my support and the best possible outcome.

Laz

Thank you so much for

Thank you so much for responding! It means a lot to me! I was beginning to worry that maybe no one understood what I was trying to convey. I did do a search here on the board and it brought up some older posts of people who discussed Lynch Syndrome and I did find some insight there. But really, thanks, I have been very nervous about putting myself out here and to know that even one person cares..it's awesome.

Chelsea71

Keep posting.  I have heard

Keep posting.  I have heard of Lynch Syndrome but know very little about it.  I don't think too many people here have it.  Perhaps some have it and are unaware.  Please continue to keep us updated.  You will find a lot of support here.  I think you were very wise to have a hysterectomy.  Sorry you are having to go through this especially at such a young age.  

Chelsea

mrscrain

Chelsea71 said:

Keep posting.  I have heard

Keep posting.  I have heard of Lynch Syndrome but know very little about it.  I don't think too many people here have it.  Perhaps some have it and are unaware.  Please continue to keep us updated.  You will find a lot of support here.  I think you were very wise to have a hysterectomy.  Sorry you are having to go through this especially at such a young age.  

Chelsea

Thanks so much for the

Thanks so much for the encouraging words Chelsea!  I had never heard of Lynch Syndrome either until my docs wanted to do genetic testing on my tumor.  This was done because I had no family history and I was only 45 yrs old.  Of course I read up online about it and took all the literature and studied it but it's not the same as sharing first hand information with someone who experiences the symptoms and long term effects of the condition.  The basics of Lynch, in lamens terms, is that it is a genetic issue where a cell that is suppose to grow and divide has problems recognizing mistakes and repairing them which can cause damage to the cell therefore may lead to a cancerous tumor.  I hope that made some sense.  The big downer that I've come to believe is that there is no cure.  I have this defect within my cells that I can't fix.  My doctors explained that it starts in the colon and then usually affects the female organs, which is why I was advised a hysterectomy.  It's difficult to live with the constant question of when and where will it affect my body next?  I know this sounds negative and that's so not like me but it seems to have become my reality.  I've had 4 colonoscopies since my DX last year and each one my gastroenterologist removes polyps that are precancerous.  This is not exactly an optimistic situation.  However this last scope, she did tell me that the polyps can take years to develop into tumors so I may not have to have the colonoscopies as often.  I got a letter in the mail two days ago from them informing me that I'm due for one, not sure if that's an oversight and just a standard letter that went out but not exactly what I wanted to hear.

Anyways, thanks for letting me ramble on about it.  I hope I was at least informative to someone.  And thanks for being here for me.  I'm so glad I found you guys!

Helen321

I'm about to get tested for

I'm about to get tested for Lynch Syndrome but have no signs or indications that I would have it, it's a precaution since I had my ovaries removed and had colon cancer so that I can take estorgen.  I think the best forum for you might be a forum of women, maybe the Uterine cancer forum or even breast cancer forum.  There is a larger female population on there.  Prevention is fabulous, I'm sorry this happened to you but the likelihood is so high with Lynch, it is a very good decision to do prevention.

PositiveThinking

I have Lynch Syndrome

Had a uterine polyp at 45. After D+C found early and precancerous uterine. Decided to have full hysterectomy and found stage 1C ovarian cancer. That was 12 years ago and through family found Lynch Syndrome was in my family on my dad's side. My dad died when I was 4 of pancreatits at 41 years old but not sure it was not cancer. I've had a colonoscopy/endoscopy every and an MRI of my abdomen and pelvis. In 2014 diagnosed with stage 1A breast cancer. it was an incidental finding from my abdomen MRI. They believe there is an increase in breast cancer with Lynch but not completely confirmed. in 2016 when I was due to have my annual colonoscopy tried to negotiate with my Dr. to wait another 6 months and she was having no part of it. Told me she had a Lynch patient that waited closer to 2 years and it was a game changer but I didn't ask for details. Decided to have on schedule and found a cancerous polyp and precancer polyp in the right and left ascending and descendin. Recommended to have entire large intestine removed. It was done laproscopically and was not as bad as thought would be. There was no residual cancer and all 47 nodes were clean. It has been 6 months and only change is bowel habits but not that bad. Unfortunately the recommendation is an annual colonoscopy because cancer can develop so quickly with Lynch. It's tough to live with the constant fear of another cancer, but my Dr's all say that at least when you know you have the syndrome you can be screened and cancer can be found early. I'm grateful I didn't wait as the cancerous polyp was growing very quickly. Keep up with your screenings!