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?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

jjevitts | @jjevitts | Oct 2, 2023

In reply to @val64 "POLE mutations are present in about 10 percent of endometrial cancers and and are associated with..." + (show)

Thank you so much!! I really appreciate this. The things I read were very confusing!

val64 | @val64 | Oct 2, 2023

In reply to @jjevitts "Thank you so much!! I really appreciate this. The things I read were very confusing!" + (show)

I just looked at some of your previous posts and saw that you had your hysterectomy over a year ago. Did they just do the POLE test now?

jjevitts | @jjevitts | Oct 2, 2023

In reply to @val64 "I just looked at some of your previous posts and saw that you had your hysterectomy..." + (show)

No they did it at the time of surgery. My Dr. moved shortly after the surgery. She explained it, but I just didn’t quite understand.

jjevitts | @jjevitts | Oct 2, 2023

In reply to @val64 "POLE mutations are present in about 10 percent of endometrial cancers and and are associated with..." + (show)

Thank you so much!! Very appreciated!

finn07 | @finn07 | Oct 26, 2023

Hello everyone, so extremely appreciative to be here with you all and Thank You 🙂
Diagnosis of Endometrial Cancer-Stage 1-Type 1A. 10/25/2019...had Surgery 12/30/2019- Complete & Total Hysterectomy...Everything's gone including having to take all lymph nodes out etc.... Per my Pre-Surgery papers I signed; because of what the PET Scan had shown, He may have had to do a Bowel Reduction on me during the Hysterectomy surgery. Moving forward I keep having bouts with unexplained uncontrollable Diareah over the past three years and this Drs staff insists I DO NOT require a 2nd PET Scan because there is Nothing to scan, it was all removed by the Dr. I've been asking when do I get my follow up PET scan since my Post surgery follow up visit 1 month after my surgery, just like what's our plan going forward the next 5 yrs.? He said Nothing, I said do I need chemo, or one pill for radiation, or outside radiation for my lower stomach to kill any hidden or run- away cells? and how far along will I get a follow up PET Scan? His Reply ... (very sternly)"THERE IS NO CANCER, I GOT IT ALL, I DONT KNOW WHY YOU ARE ASKING THIS, & NO REPEAT PET SCAN EVER, YOU'RE CANCER IS GONE BY ME w/ SURGERY. SO, NO RADIATION- OR CHEMO- OR ANYTHING IS NEEDED W/ STAGE 1-1A. I replied... So, you didn't miss even ONE single cell? He Replied "NOT EVEN ONE CELL" and shook my hand and left. That will be 4 yrs ago this DEC.
Has anyone had a similar situation? I don't feel like this is a normal practice. Personally, I want a clear PET Scan. This is my life. How can my Dr. be so adamant and 100% sure of himself after my Surgery to tell my family and I No... more treatment other than surgery and there's nothing up there to see anymore to get cancer to need a PET Scan

val64 | @val64 | Oct 26, 2023

In reply to @finn07 "Hello everyone, so extremely appreciative to be here with you all and Thank You :-) Diagnosis..." + (show)

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.

ihndz | @ihndz | Oct 31, 2023

In reply to @val64 "I'll definitely let you know the outcome of my quest for a POLE test. I was..." + (show)

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

val64 | @val64 | Apr 1 1:02pm

In reply to @ihndz "Hi, I understand your frustration and the fear that comes with having the "Big C" but..." + (show)

I don't know why this comment got so many "likes". I find it really insulting. You can keep opinions like this to yourself.

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