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Profile picture for ninjalady @ninjalady

Hi

I'd be interested to know what you/your clinicians decided re adjuvant therapy.
I am in almost rhe same position. Grade 3, Stage 2, POLE mutated. I'm in the UK and I've been given the choice of radiotherapy or not. The advice is that POLE prognosis is so good it can't be improved by radiotherapy and that POLEmut is not responsive to radiotherapy (in the lab at least) . I'm inclined not to have radiotherapy but worried as I have substantial LVSI.
Really value everyone sharing their experiences and wisdom.
Thanks 🙏

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Replies to "Hi I'd be interested to know what you/your clinicians decided re adjuvant therapy. I am in..."

@dlgbb decided to have 25 sessions of EBRT. She described this mostly in the "What kind of radiation did you get for your gynecological cancer" discussion.

This is a difficult decision, and I'm not sure what I would do in your place. On paper, your prognosis should be excellent either way. Best of luck.

@ninjalady
Hello!
I was diagnosed with Grade 3, Stage 1A, POLE mutated with substantial lymphovascular space invasion. I was offered to be in a clinical trial where they just follow up with you, or else to have 25 external beam radiation treatments. After discussion with my family, we decided to have the radiation. It wasn’t an easy experience, but when the testing was done on my tumour (endometrial), many mutations were identified. There were 3 that were specifically related to endometrial cancer: the POLe mutation, another one that is linked to Lynch Syndrome, and then one that is often related to the other mutations. My tumour had all the characteristics of a POLe mutation (especially ultra high number of mutations - there were over 350), so my prognosis was very good. Because standard of care right now is the radiation, and also because the other mutations existed that do not have as good of a prognosis, I opted to have the radiation, just to be on the safe side. Both mutations are linked to endometrial and colon cancer, and as I had been having new gastrointestinal symptoms before my cancer was actually diagnosed, I just really wanted to cover all bases in case something else was developing. I just had a colonoscopy on Monday to follow up my symptoms, and all is well. There is diverticulosis and some angioectasia, which is most likely what caused me to fail the FIT test and prompt the colonoscopy. It is a very difficult decision to make, and whatever you choose needs to be right for you. I haven’t regretted having the radiation as I feel like it covered some additional bases, but I don’t know that there is a right or wrong answer. I know that when the clinical trial was being discussed with me, the substantial LVSI was included in the category of tumours with POLe mutations that they felt were low risk. I have also been told that high grade and LVSI are characteristics of a lot of POLe mutated tumours, and doesn’t necessary mean a worse outcome. Please let me know what you decide. My thoughts are with you, and please reach out at any time.