Tested postive for Lynch Syndrome: Anyone have this?

@bevers89 I would call Mayo and see if they can give you an estimate before you go - I know for some of the procedures like even CTs and MRIs I need pre-approval from my insurance. You also should call your insurance and ask them about it. They have to cover procedures if you have Lynch. It can be a headache I know. Did you call your insurance company and ask them about it? *Sorry it took me so long to respond. I had been sick for awhile.

@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

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.

@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.

I do follow at mayo. What kind of paperwork did your doctor submit to insurance? It does toy with the emotions! I am 32 yrs old and toying with the idea of having a hysterectomy just because my aunt had stage 4 Ovarian Cancer at age 38. It puts a lot of stress on the emotions to even think of having a hysterectomy and not being able to have anymore kids!

I have Lynch Syndrome which is a lot of screenings that insurance does cover. You might consider having your doctor submit paperwork to your insurance before your screenings and verify they will cover it. Do you follow at mayo? My doctors at mayo are very familiar with Lynch.

I am was thrown into early menopause because of Lynch which was rough. I had my uterus and ovaries out. They found premalignant cells in my uterus. It is hard because not everyone understands the emotional impact of Lynch unless they have it.

You may want to call and talk this over with your insurance. Perhaps, with a doctor letter and/or documentation, they may consider paying for your screenings.

I never miss an appointment! However, I wish insurance would pay for all of these cancer screenings.... Just because I am not "of age" for cancer screenings they all come out of pocket for me :/.

Colleen and @bevers89 Right. Lynch is a rotten egg in the carton of life. I am not sure how it works, but I have a bunch of stuff which respond to the name of Lynch Syndrome. Anyway, If I am fortunate, I will find a doc before I am 100 years old who has their stuff together and can deal with Lynch. But there is always something new coming along. I just learned this morning that a couple of my mutations came on because of bad water some time long ago, probably around 50-60-80 years back. PPPHHHHTTTTT!!!! oldkarl

@bevers89 and @nrocpop, it's a double-edged sword isn't it? You have a lifetime of close monitoring for cancer and all the cancer screenings because of Lynch. But you have a life time of close monitoring and cancer screenings. So many people don't do the screening that are effective and available for some types of cancers. I bet you never miss an appointment!