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

Posted by val64 @val64, Sep 3, 2022

I recently received the pathology results (Stage 1B Grade 3 endometriod carcinoma) on the specimens from my TH-BSO. I had thought that endometrial cancers like this would be routinely tested for mutations in a gene called POLE, which confers a better prognosis, but my sample was not. Apparently this is not part of the algorithm at the university hospital where I am being treated. They say they're working on offering this test, but that doesn't help me.

I have tried to ask my care team what my options are for getting this test done, but so far the only thing they mentioned is an extravagant sequencing test that isn't covered by insurance and seems to cost ~$6000. This is overkill, and way more than I would be willing to pay out of pocket.

Has anyone had POLE mutation testing done on their tumor specimen? If so, where where was this testing was performed? Did insurance cover it? How much did it cost?

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@dlgbb

I just had a total hysterectomy with removal of fallopian tubes, ovaries, and pelvis and aortic lymph node testing. All came back as well as I could hope, other than substantial lymphovascular invasion. Diagnosis was grade 3 endometrial endometrioid carcinoma. I did have genetic testing done, and it came back with several genetic mutations, including POLE. As the testing showed MSS and very high Tumor Mutation Burden, I am really hoping that immunotherapy may be the only follow up, but I have no idea. I have my surgery follow up in 2 weeks.

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That's great news that your tumor has a POLE mutation and a high mutation burden. It will be interesting to see what follow-up your doctors decide on. Based on the literature, it seems that there's a low chance that your tumor would recur even if they only observe. What are you hoping for?

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@val64

That's great news that your tumor has a POLE mutation and a high mutation burden. It will be interesting to see what follow-up your doctors decide on. Based on the literature, it seems that there's a low chance that your tumor would recur even if they only observe. What are you hoping for?

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Honestly, I don’t know what I am hoping for. I think I might feel more confident if immunotherapy or radiation is offered, but I have to trust my gynecological oncologist. I have received such good care, and am very grateful for Canada’s healthcare system. I am a patient of the Arthur J E Child Comprehensive Cancer Centre in Calgary.

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