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Tested postive for Lynch Syndrome: Anyone have this?

Cancer | Last Active: Nov 26 8:15pm | Replies (46)
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@colleenyoung

@bevers89, I hope @stlsampsondev will return to share how they were able to work with their doctors at Mayo to submit forms to get insurance to cover screenings. You may wish to speak to Insurance & Billing at Mayo Clinic to inquire further https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance

I bet Sophie @doslovesdogs21 understands your stress and emotions about weighing your options regarding inheritable cancer, fertility and choices. See the discussion they started here:
- Feeling a Fertility Timeline Crunch https://connect.mayoclinic.org/discussion/feeling-a-fertility-timeline-crunch/

Bevers, I recommend talking to your team at Mayo. You may have options regarding having more kids and preventative measures for cancer. You're certainly not alone. Besides connecting with others here, you can talk with a genetic counselor at Mayo Clinic.

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Replies to "@bevers89, I hope @stlsampsondev will return to share how they were able to work with their..."
annewoodmayo | @annewoodmayo | Jan 18, 2023

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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