← Return to Was your endometrial cancer tested for mutations in the gene POLE?

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@cls316

Hello NatureGirl15,
I am recently diagnosed with endometrial carcinoma 1B Grade 3. I had a total hysterectomy 2 weeks ago and await pelvic radiation therapy (28 doses).

Kindly post the link to the link to the NCCN Guidelines for endometrial carcinoma recommendation of molecular classification based on 3 tests. I would like to pursue this further with my physicians.

Wishing you all the very best.

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Replies to "Hello NatureGirl15, I am recently diagnosed with endometrial carcinoma 1B Grade 3. I had a total..."

@cls316. Welcome to Mayo Clinic Connect. I know this is a difficult time for you but you are most welcome to this very supportive site.

I don't know much about the molecular classifications that @val64 brought to this discussion. I'm going to tag @val64 as this is an area she knows about and can help you with.

I'll try attaching the guidelines to this post, but that may not be successful.

The NCCN is annoying in that they make you register to get access to their most recent treatment guidelines. I used an account from my former job, but I think you should be able to register too. Go to https://www.nccn.org/guidelines/category_1. Select "Uterine Neoplasms". I can't see what it does at this point because it is automatically logging me in, but I think it will give you the opportunity to register or log in. You probably need to say that you're a healthcare provider or medical professional.

I realized a number of things after I started this thread. One is that POLE mutation testing is most definitely NOT standard of care for endometrial cancer in the US, and almost no hospitals offer it to newly diagnosed patients. You can sort of figure out why from the NCCN guidelines: although they recommend POLE testing, the treatment algorithms don't include the results at all. This contrasts with the European guidelines (https://ijgc.bmj.com/content/31/1/12.long), which recommend considering no treatment for patients with POLE mutations. No US physician is going to recommend foregoing treatment because of this mutation without it being in a set of official guidelines. So if you want to use this in making a decision, the doctor is going to argue against you.

The immunohistochemistry for mismatch repair (MMR) genes and for p53 should be on your pathology report. If there is an MMR defect, then there's probably no point in looking at POLE. Being "positive" for p53 doesn't rule out a "good" POLE mutation, but probably makes it less likely.

I'm happy that I spent $450 out of pocket to get the POLE test done at Stanford, even though I didn't get the result I wanted. I'm not completely sure what I would have done if it had been positive, but I definitely would not be having chemo. Since then, I have also had a multi-gene sequencing panel done on my tumor, because I'm a molecular nerd, but if you want to do that, be very careful about what they are going to try to charge you, if/when insurance doesn't cover it. (The list price at my hospital is well over $10,000. But after investigating, I'm getting it for less than $1000.)

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