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Was your endometrial cancer tested for mutations in the gene POLE?
Gynecologic Cancers | Last Active: Apr 1 1:02pm | Replies (28)Comment receiving replies
@val64 Hello, again. This is so way out of my league as I don't have a medical degree or a degree in a molecular biology field.
I was a patient at Mayo in Rochester. I had a total hysterectomy with bilateral salpingo-oophorectomy. My diagnosis was Endometrial Adenocarcinoma, Stage 1a. FIGO Grade 1. Myometrial invasion was 2mm, with depth of myometrium at 19mm and 10.5% myometrial invasion. Sentinel node biopsies were negative.
Were you surprised by your diagnosis or did you know this was likely the case? How are you feeling with all of these changes in your life and decisions you will be making?
Here is what I located in my test results:
MMR Protein and IHC were performed but no POLE testing.
Result Provided diagnosis: endometrial adenocarcinoma
IHC: Normal expression of MLH1, MSH2, MSH6, and PMS2p
No adjuvant treatment was recommended when I was first diagnosed.
I wonder if other Mayo Clinic Connect members have had POLE testing? I haven't seen specific discussions on this.
Will you let me know what your cancer care team recommends for treatment and if you seek out a second opinion where you will go? If you decide on a second opinion at Mayo here is the link:
http://mayocl.in/1mtmR63
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I'll definitely let you know the outcome of my quest for a POLE test.
I was not surprised by the diagnosis. My ultrasound report from early June said "suspicious for endometrial carcinoma" which I figured meant that I almost certainly did have cancer, since the radiologist would hedge if they weren't sure.
What did surprise me was how long it took to get from that to the hysterectomy (mid-August). I had a D&C in July where they removed a large polyp, which the pathologists diagnosed as a high-grade endometrial carcinoma, but deferred typing until the hysterectomy. I started lobbying for molecular testing then (where by "molecular testing" I mostly meant POLE testing, but I guess I wasn't specific enough), and the doctor said it couldn't be done until the resection, because of the Pathology department's algorithm. Then over a month later I discover that what I really wanted wasn't part of the Pathology department's algorithm either. My main emotion this whole time has been frustration.