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Was your endometrial cancer tested for mutations in the gene POLE?
Gynecologic Cancers | Last Active: Apr 1 1:02pm | Replies (28)Comment receiving replies
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
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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.