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

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 🙏

@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.

@val64 Thank you for directing @ninjalady to this ongoing discussion. Here is where @dlgbb described her radiation in the discussion:

"What Kind of Radiation Did You Get for Your Gynecological Cancer:

-- https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/?pg=13#chv4-comment-stream-header

It's so very helpful to share these experiences with one another.

@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.

I was NOT tested for Pole, but I was for a number of MMR statuses. I don't know why I was not. But I will ask in November when I have my nine months check up. I would imagine that the decision to do so is determined by the lab/pathologist? Or is it the surgeon?

@dlgbb Thank you for the explanation of what was found in your pathology and what and why you decided on radiation therapy.

How are you feeling? Are you back to your routines and outdoor activities?

POLE testing is not done routinely in the US. The NCCN guidelines, which list recommended tests and treatments, suggest POLE testing. BUT they do not change treatment recommendations based on the results, unlike in the UK or Canada apparently. Probably because of this, insurance companies won't pay for it for patients at their initial diagnosis. They will after a recurrence. (Hospitals will happily perform any test that insurance will pay for.)

So, just like when I originally started this thread 3 years ago, if you want a POLE test, you have to beg and pay for it yourself.

Thanks for that explanation. I also did an extensive genetic test once I had a confirmation of cancer (otherwise would have been out-of-pocket). I skimmed it for red flags (no doctor reviewed it with me), but I'll go back and look if it's in there?

If you had a next generation sequencing (NGS) panel done on the tumor tissue, POLE should have been one of the genes included. But if you had a genetic test done on your blood looking for inherited mutations, that won't tell you what you want to know. (There are also "liquid biopsies" where they take blood, remove the blood cells, and sequence the free DNA in the blood, which may include "circulating tumor DNA (ctDNA)". Depending which test, that might detect POLE mutations from the tumor. But these tests only sometimes work.)

@naturegirl5
Hi Helen!
I am feeling very well. I would say my energy is probably back to 80% of what it was, and my stomach has settled down a lot. I still have some swelling, but that may go on for some time. I just had another follow up appointment in Calgary this morning, and all is well. I will have one more appointment with just the physical exam, and then it will be time for an appointment with a scan. I have really enjoyed the summer, and have line danced, kayaked, hiked a bit, and bicycled. I am just so grateful that I have felt well enough to do these things! I also got to see our youngest daughter get married in Toronto. I am so, so grateful.