What were your first signs of endometrial cancer?

Abnormal bleeding

Exactly. Bleeding for about 12 days after 10 years going through menopause. He brushed it off as "one last bruh-ha for my female parts. Last Dec I was treating what I thought was a UTI. Took antibiotics and didn't get better. Took another round of antibiotics specifically for bladder infection. Didn't work. Had ultrasound of bladder but was inconclusive because I couldn't hold enough fluid. It was too painful. In the mean time, I had another vaginal ultrasound, which there was a little blood on wand, and a pap smear. The pap smear was normal and when I asked why the pain was so intense in the uterine area, he did a biopsy. He didn't get enough tissue and before I could get back to him I went to ER because pain was so bad. CT scan showed mass and it turned out to be stage 3C endometrial cancer. I just finished my 3rd chemo on April 24th. I have another on May 15th and hopefully I can get hysterectomy afterwards. This waiting and not knowing is torture.

9 years post ovarian cancer and total hysterectomy/oophorectomy, and not having had a UTI since childhood, a slowly increasing pressure sensation on one side of my bladder was getting intense to the point it felt like a burning sensation on the OUTSIDE of the bladder when voiding. No bleeding. A little fullness in the lower part of the belly. Was starting to feel that starving, then sudden fullness after only a few bites, too. Had just finished signing papers to end a 33-year marriage and thought I may be getting an ulcer due to the circumstances. Went to see the GP who had been following me for almost 30 years, and he said it just didn't sound "normal" for me. Did the CA-125, the CT, the MRI, the ultrasound, the vag. ultrasound and when the results came back, they said a kidney was being pinched off by something which led to the surgery where they found cancer to be obstructing the ureter and stuck to the bladder and lining the lower right quadrant of my intestinal cavity. Needless to say, as with the ovarian cancer surgery 9 years previously, the laparoscopic surgery they had promised ended up in a full xyphoid to pubis incision (again!), along with waking up for the 2nd time in my life being told what they initially thought was benign was actually cancer. Great surgeon! 5 weeks of radiation and it's a blessing to be here!

@jane Thank you for sharing your experience. It's so good that you have a GP who has been your doctor so many years and took you seriously. I agree. You have a wonderful GP, surgeon, and radiation oncology team. When did this more recent cancer that was obstructing your ureter occur?

2017, so its been 8 years now. The insurance I have through my employer is no longer covering the ongoing yearly testing the oncologist has recommended, so going forward it will be a tough decision to be re-tested yearly. It is unfortunate we have to make decisions like this, particularly when one works for a top medical facility in the world, one would think it should/could be covered as preventative care.

Did you have a hysterectomy? What is the ongoing yearly testing the oncologist recommended?

My Dr orders CA125's every 3 months and an MRI yearly as standard and additional if any symptoms warrant.
I am 3 years out since diagnosis (Feb 4th 2022).
What is everyone else's experience with surveillance? What do your doctors order to ensure a recurrence is caught in a timely manner?

If the insurance is no longer covering it, tell your Dr about your symptom of fullness in abdomen. Post OvCa patients with fullness in abdomen should always have labs (including CA125) and abdominal imaging. Take care of yourself, do not depend on insurance companies to look out for you.
Only yearly testing is minimal at best.

Additional, anyone can order their own lab tests from LabCorp. The cost of a CA125 test at LabCorp is generally around $69, plus a $4 service fee. This test is a blood test used to detect ovarian cancer and other types of cancer.

I had serous papillary carcinoma- had two different opinions- Moffett which was exceptional- they actually gave a borderline stage 2-since it was entering the cervix- down in South Fl they said stage 1A. I am now clear 8 years- my oncologist said he does not need to see me anymore - just my regular gyno for checkups. Had chemo and brachytherapy. However, I always check to se if there is staining- that is how I became aware of it. I was 69 when diagnosed. A real shock.