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

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?

@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.

@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/

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

@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.

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 🙏

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.

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?

I have had 2 recurrences since my total hysterectomy almost 5 years ago (which uncovered a cancer in my endometrium). After 1st recurrence I did the whole external/internal radiation protocol. Starting with the first recurrence, my oncologist does a scan, usually, CT, about every 3 - 4 months. At 2nd recurrence he did a PET just to make sure there were no other hot spots. I was ok there. But, my point is, just because you have a "total" hysterectomy, doesn't mean there are no cells left. Apparently, there were with mine. And so have other women who have recurrences, as I've read on this thread. For me now, this is just a fact of (my) life. I will probably always be scanned for the foreseeable future. Hope this helps.

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.

Hi finn07. I'm not sure I totally understood your story, especially the part about the bowel resection. Did they actually do a bowel resection? Did your diarrhea start after your hysterectomy?

If your endometrial cancer was stage 1A, grade 1, that means they didn't detect any cancer outside your uterus, and the cancer was not aggressive. The "standard of care" for women in this situation is monitoring, usually every 3 months for 2 years, by pelvic exams, unless there are symptoms, like vaginal bleeding. Not having any scans of any type is normal.

Many women with endometrial cancer never have a PET scan at all. I never had one. (I had one CT scan before my hysterectomy and another after I finished chemo.) PET scans are not "standard of care", and US insurance companies usually won't pay for them for women in your situation. If you have a lot of money, you may be able to demand one paid out of your pocket, but that doesn't seem like a good use of money to me.

It sounds like you have gone 4 years without your cancer recurring, so that's great! Usually if there's a recurrence, it will be within 2 years, with a few recurring between years 2 and 5. After 5 years you're considered cured, although there are still very rare recurrences.