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Tested postive for Lynch Syndrome: Anyone have this?

Cancer | Last Active: Jan 19, 2023 | Replies (40)
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@annewoodmayo

Hi, everyone.

I was diagnosed with Lynch last June (2022). I'm sorry to piggy back on this thread, but I didn't know how to start a new one that would be really effective at eliciting responses.

Are there any docs are Mayo who are researching- or at least really up-to-date on- the connection between Lynch PMS2 and GYN cancers?

I've got the PMS2 (exons 11, 12 dup). I read the link to the Mayo gastroenterologist. In it, he said that most gastr Lynch cancers would start before age 60-65.
My gastro screenings are all done and looking good.

Right now, I'm dealing with GYN screening. I feel like I'm kinda being bullied by doctors into having a radical hysterectomy when I am asymptomatic.

I have an autoimmune disease, too, that will complicate recovery from surgery. I don't want another abdominal surgery ( had my gall bladder out) without a solid reason for it.

Thanks for any help you can provide. Sorry that I'm not being strongly supportive of the previous poster/s.

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Replies to "Hi, everyone. I was diagnosed with Lynch last June (2022). I'm sorry to piggy back on..."
stlsampsondev | @stlsampsondev | Jan 19, 2023

@annewoodmayo I also have PMS2 and I follow with Dr. Boardman at Mayo in MN. She is really good and has a lot of patients with Lynch Syndrome. I also have auto immune diseases (Rheumatoid Arthritis and EOS Asthma). I unfortunately didn't find out about my Lynch until after we took out my uterus due to pre-malignant cells - that is the only reason we did genetic testing.

I would not rush into a radical hysterectomy without getting another opinion especially if you have no symptoms. I had symptoms - like a lot of pain and abnormal bleeding so I had signs something was wrong. If you still want kids I would wait - if you are done with having kids then it depends on what is best for you. I am not sure how old you are but I was 40 and it forced me into early menopause which was also tough for me so I wouldn't just rush into it.

My autoimmune disease complicates things too because I have to be careful about taking immunosuppressants. My doctors just recently approved me to start on one but they watch everything closely. It can be a lot

I would see if you can get an appointment with Dr. Boardman. Also there is a doctor in FL who is also up to date on it depending which location is better for you. Hope that helps. If you don't mind me asking what auto immune disease do you have?

Thanks,
Heather

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