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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
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.
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Hi, I understand your frustration and the fear that comes with having the "Big C" but what I would like to know is how are YOU feeling right now, are you okay? Do you have any new symptoms after the surgery that make you fear that something is or might be wrong?
Did you had a total hysterectomy and "NO treatment" was needed because it was a very low grade cancer?
If you are basically okay, are in remission, healthy and seeing your Oncologist at least every 6 months for pelvic exams and consultations and everything is going well....then those are very good signs.
I think it's best to focus our energy in enjoying life, having fun, doing whatever makes us happy 😊, keep busy, relaxing.
Maybe it will be a good idea to put this POLE test research in the back burner temporarily.
I'm saying this with much respect, care and compassion, and based on my own life experience.
Occasionally our minds betrays us and we go nuts thinking about the "what if....." that only makes us sad, scared and frustrated.
I came to the realization that I can't live my life worrying continuously about the unknown with my health, wasting the next 5, 10, 20, 30+ years scared.
I don't know what the future holds, but I want to be happy and not worry so much about the numbers and percentages % attached to my past pathology reports which by the way weren't too bad, Thank God!
This is our new normal and we have to make it the best darn years of our lives while we can, period 😊 God bless us all