r/endometrialcancer • u/Muted_Order_4637 • 11d ago

Anyone diagnosed AFTER total hysterectomy?

I’m interested to know who all didn’t know they had endometrial cancer going in for a hysterectomy, but discovered afterwards. How was your surgery performed (robotic, open) What was your stage? And what was your treatment protocol? Mine was discovered after.. robotically.. stage 1.. mot completely sure about treatment yet. I am Scared because it was removed in pieces.. not intact. Do not yet know if there was precautions taken to contain it all since it was removed vaginally. Looking for your situations..

9 Upvotes

100% Upvoted

5 comments sorted by

6

u/MeanMugginMin Stage IB 11d ago

In 2023 I had 2 biopsies that were negative, an in office and an under GA hospital D&C. I continued bleeding even after the procedure, and ended up with blood clots after the D&C, including a saddle PE- which I needed immediate surgery to remove and heavy blood thinners after, which lead to 'oh shit' amount bleeding. I was transferred to Stanford. They did an open surgery with vertical cut (I also had a huge cyst/mass). Stage 1B, 81% invasion. Still not sure how the heck it was missed in 2 separate biopsies. As of June this year, still cancer free.

5

u/Muted_Order_4637 11d ago

Glad you are still cancer free! I had absolutely no symptoms of anything.. I had been diagnosed with colon cancer and during the mri and ct scans something showed up on my uterus that was suspicions. So, since I was having surgery to remove the colon cancer they figured I should go ahead and have a complete hysterectomy.. to be safe. Never any biopsies or anything. Until after the surgery. That is when the discovered what they had been suspicious of was actually nothing.. however, they did find endometrial cancer.

2

u/Mercury2468 Stage IA 11d ago

I had a hysterectomy in May for atypical hyperplasia and they found a surprise cancer: endometrioid adenocarcinoma, grade 1 stage 1a. My surgery was laparoscopic, robot assisted with removal through the vagina in one piece. So far my treatment has been another surgery to remove ovaries and now I'm waiting for pathology results on that.

3

u/theycallme_shorty 10d ago

I was diagnosed after surgery. My biopsy did say suspicious for adenocarcinoma, but not a for certain diagnosis. Had a robotic total hysterectomy and surgical pathology showed grade 2 stage 3 endometrial cancer. Stage 3 due to cancer cells found in a lymph node. I've since had 6 rounds of chemo and 25 rounds of external radiation. The last scan showed no evidence of disease (NED).