Lynch test in USA, Miami?

[egejo]

Hello there I'm from Ecuador and two weeks ago I got a sessile polyp removed from sigma/rectum in a routine colonoscopy that was about 1.5cm and turned to be cancer a well differentiated one at least.
After that it has been a wild ride of emotions everyday, as I'm 31 years old the pathologist recommend for further Lynch testing on the tumor even though it is well defined but unfortunately got fragmented during the process so the borders were not able to be differentiated.

Yesterday I received the results for Immunohistochemistry (IHC) and BRAF V600 only to find out that further testing is required to confirm Lynch and these test are not available in Ecuador.
My results where: High MSI instability, No BRAF mutation, MLH1 -, MSH2 +, MSH6 +, PMS2 -

So please I'm looking for advice of a place I could go in Miami or somewhere else in the US to get my tumor tested and my blood too at once regarding Lynch.

They now request me to do MSI from PCR or MLH1 Promoter Methylation and KRAS testing to confirm Lynch.
I have a schedule surgery for the first week of January but the Dr. said it depend if it is Lynch I should have a subtotal colectomy or otherwise only a segmental colectomy surgery of the sigma section, but Im worried to have these done before confirmation and also have some fear of the cancer to spread during the surgery waiting.

I also had a CT with contrast scan were the results were all fine and did not show any further tumors, here having a PET/CT is something very difficult also almost reserved for metastasis patients only on one public hospital only.

So please any guidelines to were or whom to contact will be really helpful.

Thank you for your time in advance.

[Nik Colon]

One thing that may ease your mind, MSI-H usually have better outcomes and more treatments available. Also, well diff is another good thing. CRC is usually slow growing. All your info is a good thing for the most part. I would not worry too much about not getting in right away. Finding where to go and the right place is the most important. I don't know where in FL, but will post a link. Best wishes. (Again, all info I give is just what I know or opinion, all info should be checked with a doctor)

Here is a link, you can do a search in this link for specific locations
http://health.usnews.com/best-hospitals/rankings/cancer

Search from the link for FL
http://health.usnews.com/best-hospitals ... er-surgery

[egejo]

Thank you for your reply the site was very helpful.

[Bob Bones]

You won't need a sub total even if you have LS. As long as you stick to regular screening your chances of another cancer are on par with the general population.

I don't know why they still insist on this outdated practice. Take my advice and Google around for more information and take a 2nd opinion if you can,

This type of surgery will change your life forever so please think carefully

Their is no quick fix to finding out if you have LS the tests will probably take months to find a mutation

High MSI and your age would point towards LS but you won't know for sure until testing is finished. The blood test is only for other members of your family once a mutation has been identified, it won't be of any help to you


Good Luck with your results.

www.lynch-syndrome-uk.org

[egejo]

Exactly what I was thinking, I have already changed my mind from hurry to well think options and first I'm starting to contact MD, Jose G Guillem at Memorial Sloan Kettering Cancer Center in NY and will probably will get my surgery over there.
Unfortunately over here in Ecuador I have seen many cases like these one where a bad or outdated medical advice changes all the outcome and life of persons. To my dad they wanted to change his hip joint prothesis and after investigating it was all well and no surgery was needed and it has been years now.

Thanks for spending your time in replying me

You won't need a sub total even if you have LS. As long as you stick to regular screening your chances of another cancer are on par with the general population.

I don't know why they still insist on this outdated practice. Take my advice and Google around for more information and take a 2nd opinion if you can,

This type of surgery will change your life forever so please think carefully

Their is no quick fix to finding out if you have LS the tests will probably take months to find a mutation

High MSI and your age would point towards LS but you won't know for sure until testing is finished. The blood test is only for other members of your family once a mutation has been identified, it won't be of any help to you


Good Luck with your results.

http://www.lynch-syndrome-uk.org