uterine serous carcinoma

  • 1 reply
  • 90 subscribers
  • 107 views

Hi everyone,

I'm feeling really overwhelmed and could use some support.

My mom was diagnosed with uterine serous carcinoma in June 2026. It feels like we've been going in circles trying to find out what was wrong.

In September 2025, she had one episode of postmenopausal bleeding and never bled again. At the same time, she started noticing an occasional white speck in her urine. She saw her primary care doctor right away, who was convinced it was a UTI. After multiple visits, she was referred to a urologist to check for kidney stones, but everything was normal.

In February 2026, the urologist suggested she see a gynecologist. She had an endometrial biopsy, which came back negative for cancer. Because the white speck kept appearing, her gynecologist ordered a D&C two months later. That's when she was diagnosed with uterine serous carcinoma.

Since then, her CA-125, CT scan, and PET scan have all been normal. We still don't know her stage, it will be determined after her hysterectomy this Friday.

I'm terrified because I know USC is an aggressive cancer. I'm worried we didn't catch it early enough, even though my mom sought medical attention as soon as her symptoms started. It's also hard not to wonder if things would have been different if she had been referred to a gynecologist from the beginning instead of spending months being treated for a UTI and kidney issues.

Has anyone else had a similar experience where imaging was normal or an initial biopsy was negative, but the D&C found uterine serous carcinoma? I'd really appreciate hearing your experiences while we wait for surgery and staging.

  • Hi Segunda

    Welcome to the womb group. I am sorry to hear that Mum has had a diagnosis of serous endometrial cancer.

    I understand that it is a worrying time and I understand your concerns about the time it has taken to find the cause of her symptoms. 

    Serous is a type 3 endometrial cancer similar to one that I was treated for in 2022. I am coming up to 4 years post treatment and doing well. 

    Mum did absolutely the right thing in getting checked as soon as she had any symptoms. 

    From my understanding and experience of grade 3 cancers and from what my consultant explained- they can grow in smaller patches/superficial lesions rather than the more common types of endometrial cancer where they tend to grow more into the uterine cavity. In theory it would be possible to miss a small patch as the biopsy only takes small samples. A d&c would be more likely to pick up something as it samples a bigger amount of tissue. 

    Because the scans are better at picking up more visible lesions it is possible in theory that they missed the smaller patches. Ca-125 is just a marker and a higher or lower level does not diagnose or rule out cancer. A normal ca-125 could still be present especially if the cancer is still at an early stage and confined to the uterus. My ca-125 remained in the normal range throughout diagnosis and treatment of my grade 3 cancer. Mine was low stage. 

    I think the more reassuring aspects are that.............

    -Mum had one episode of bleeding and sort advice straight away. She has not had any recurrent bleeding.

    -her scans are showing as normal. This means that there are no obvious signs of metastatic spread. 

    - Ca-125 is not showing as elevated. 

    - Other than the white flecks in her urine (that have been evaluated by her doctor) Mum does not appear to have any symptoms that could indicate more widely spread disease. Although this does not rule out some microscopic spread. 

    The surgery on Friday is what will determine any staging. Everything that is removed will be checked. 

    During my time on here there have been a fair few ladies who have had treatment for a grade 3 cancer (serous, carcinoma sarcoma, clear cell etc). Although they can behave more aggressively- it does not mean that they necessarily have. I was stage 1. Stage 1 is where the cancer in contained in the womb. Stage 2 is where there are cells found in the cervix. Stage 1 and 2 are considered contained and early stage. If there is some spread out of the womb but still within the pelvis then this would be considered locally advanced. 

    Where there is a difference with the grade 3 cancers is that there is normally some sort of follow up treatment advised and this is done from the earlier stages so it may be useful to prepare for that to be suggested. A lot will depend on the post op results where everything will be confirmed. Mine took around 3 1/2 weeks to come back post op and I had chemo and radiotherapy. 

    I wish your Mum well for her surgery on Friday and hope that it confirms that the cancer has been caught at an early stage. Hopefully the cancer will be completely removed and any possible further treatment would be adjuvant- to mop up any possible stray cells to reduce the chances of any recurrence. 

    If there is anything you or Mum want to ask about, please do so. We also have the Macmillan Support Line available from 8am-8pm daily if either of you feel like talking things through would help. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm