Hello Helen. There is a 50% chance a child will inherit the gene from a parent. I have Muir-Torre, MSH2. I inherited if from my father (MSH2 colon cancer survivor) but he has no symptoms of Muir and neither does my sister who also has MSH2. The important thing is to get tested for the gene and if you have it get all your screenings. I hope this was helpful. I am sure others will chime in with more medical stats. Good luck. Maryeileen

My husband has muir torre. Only one of our children have been tested. She's fine. The other two haven't had insurance.

Thanks. So is the risk still 50% when we already know I have the MSH2 gene? Or do the risks increase with that knowledge? It's confusing at the moment. I hate not knowing when we will see the geneticist to get some answers.
My Dad had colon cancer twice within a year which was what led to the genetic test, it has only recently come to light he has the Muir-torre which wasn't something we were tested for at the time.

Megan50 that must be hard. Can I ask how old your children are? Do they want to be tested? I have 4 children but they won't test them until they are in their mid 20s here. No insurance needed thankfully. My brother was clear for MSH2, my sister and I both have the gene though.

Thanks
Helen

Hi Helen, I am also an MSH-2 person with Muir Torre. Unfortunately, I do not know the particulars as to how likely one is to have the gene or not. I am regularly in touch with my genetic team. If you like I can put that question to them, and see what answer they might give. My two children are still way too young for testing (turning 8 and 5 in the next two months). I have one brother and first cousin who tested negative for Lynch Syndrome, and my other brother and cousin are not getting tested at this time (unfortunately). I am the first officially diagnosed person in my family, and all relatives who had the associated cancers died in their mid 40's, so I have no history as to how likely one had Muir Torre or not. Your question is interesting to me because I did not even know that you could be MSH-2 without Muir Torre. It is all a bit confusing, I most heartily agree. I hope your wait will not be long, but if you would like I will pose that question to my team. Take Care, Ali

Our insurance only covered enough testing to cover the abnormal proteins, so we don't know what gene mutation he has. It's been almost 3 years since he was diagnosed. At the time it looked like there were only about 200 people in the literature with Muir Torre. It certainly looks more common now.
Our kids are all married. Our youngest was tested last year. The boys haven't talked about it since they have insurance. They are 30 and 32.

Hi! I'm a bit confused by the question and answers. MSH2 is the gene associated with Lynch and Muir-Torre. There's no other Muir-Torre gene. If you have the MSH2 gene, you should be monitored, but it doesn't mean you are necessarily going to get the cancers. You're just at higher risk.

Hi all, I don't know if I am in the right place but I am looking for a Muir Torre support group. Recently diagnosed and looking for support and information.
Have I found the place?
Kay

Kay, welcome to the group. Start a new thread if you have any questions.

Hi all, I have a question concerning genetic testing. I know I have Muir Torre now, don't have or plan on having any kids so I don't think I need genetic testing.?????? Also my oncologist warned that my siblings should be careful about having the genetic testing if they were going to bill insurance because some insurance companies might then view this as a pre-exisiting condition and possibly not cover any of the resulting cancers. Anyone have any experience with this issue?

I would check with a genetic counselor. Ours was really good about giving the pros and cons of testing. We recently applied for individual health insurance and were denied because of the cancer. The application was very specific that it didn't want genetic information though. They said we could apply after a certain time period showing no recurrence of cancer or we could apply to our states high risk pool. Life insurance can ask for genetic results. Fortunately we already had good life insurance.

I agree with consulting your genetic counselor. In Pennsylvania insurance companies are not allowed to use the information as a pre-existing condition. You may want to check with your state. Also, in 2014 I believe the new health care laws are addressing the issue of pre-existing conditions and ability to obtain health insurance.

wvprofessor- I believe Insurance companies can no longer exclude treatment coverage based on genetic testing. Affordable Care Act made it so insurance companies cannot screen upon pre-existing conditions.

A law was passed many years ago (approx 10) that prohibits discrimination based on genetic testing. Google this and send it to your Dr. Life insurance and Health insurance ave completely different purposes , one estimates risk of getting illness and the other to help you avoid it or to tx it.

Hi! I'm trying to figure out whether this site is still active. I just got word that I very likely have Muir Torre as a result of a biopsy of an oil gland tumor on my leg and the fact I've had uterine, colon, and kidney cancer. (Yippee!) I am an adoptee and do not have children. Is there any benefit to getting a genetic test done with that being the case? I don't have a good handle on that.

Welcome. I'd check with a genetic counselor and see what they recommend. So sorry for the dx, but it sounds like you've already had your share.