Hi everyone, thanks for reading my post. In summer 2022, I was diagnosed with stage 3 endometrial cancer that had spread to my right ovary (they originally suspected ovarian but the womb was a shock as I’d had no symptoms) I had surgery, chemo, more chemo+radiotherapy and then finally brachytherapy in Feb 2023. There were no signs of anything left behind.
I’m just feeling a bit unclear about my follow ups. So, my oncologist passed me back to my surgeon for follow ups. I’m on six monthly appointments now but only seem to have a ca125 blood test if I request one and no real plan re. Scans. Can anyone with a clearer plan let me know how it was communicated to you please? There’s a Macmillan team at my hospital but I only ever seem to be put through to the nurses who then book me a blood test but I still don’t get a clear picture of the plan. Thanks x
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OrdinarySoul
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Can’t help on the follow up for you but might I suggest that you post in the endometrial cancer section as the ladies there would probably have more knowledge. The ladies here are usually more knowledgeable about ovarian cancer follow ups
I was diagnosed at a similar time to you and started off on 3 monthly check ups then moved onto 4 monthly and have my CA125 checked a few days before the appointment.
They keep suggesting that I can move on to 6 monthly appointments which I’m fine with but I when I say yes but can I have my CA125 checked at 3 months and just see the consultant at 6 monthly intervals they then say we’ll see you in 4 months 💁♀️.
I cannot make them understand that I’m totally fine with 6 month check ups but would like the reassurance of a CA125 at the halfway point as this was practically the only symptom I had (apart from a one off bleed).
This is my experience not sure if it helps or hinders? Xx Jen
Thank you for replying - I feel like I could really do with a road map but I wonder if it’s kind of led by us a bit which makes me feel nervous to be hypervigilant to anything!! It’s exhausting!
Hello Ordinary soulI think that if I was you I would query why I've been passed back to the surgeon for follow ups - I haven't heard of anyone who hasn't continued to be monitored by Oncology (correct me if I'm wrong, ladies!). It could be that it is different for endometrial cancer, but I can't really see why. I believe that the surgeon would only come into play if another op was needed?
The fact that you are having CA125 tests indicates that your cancer is classed as Ovarian, so I believe you should be having these on a regular basis and not have to request them.
When was it you were passed back to the surgeon, have you asked them why this has happened?
You could contact your Oncologist's secretary and request an appointment to have a better explanation, and depending on what is said you could say that you would really prefer to be under their care, with regular CA125 tests and a plan on scans.
After I’d completed chemo, had a CT scan and was told I was in complete remission I was sent back to the gynaecology department albeit the person I see is the cancer specialist.
I was told in the beginning that if everything goes to plan with their prognosis then that would be the plan. If I had further issues then I would have stayed under oncology.
I get seen every 4 months now, have a physical examination and my CA125 is checked. I feel this is sufficient for my needs.
I guess different health authorities have different ways of doing it. xx Jen
Thank you - I think I’m getting the picture that everyone’s experience is different depending on where they are. Which is sort of understandable but then I feel worried that what if my area aren’t doing the right thing.
My experience doesn't include a CA 125 test because it never showed up as an indicator before I had surgery which then showed cancer. Everything was removed and following histology, were sure all cancer had gone and so didn't need chemo. I had 3 monthly checks. The first included a CT scan but the 2nd didn't. When I asked why they said they don't necessarily do scans each time and only wanted the first one done as belt and braces. I am a year after surgery now and my appointment in April is with a nurse. I have been told to contact the department at any time should I be worried, particularly looking for rapid weight loss, lumps, changes in passing urine or in bowel movements. I'm putting my trustbin the experts. I've been seeing a psychologist who specialises in people with or recocovering from cancer. My specialist nurse referred me about 3 months after surgery. He had helped my mental health greatly and would recommend anyone to have some psychological help as part of treatment. I know there is no guarantee it won't come back but I feel better prepared mentally. I hope this helps you in some way. Look after yourself. X
Thank you - I found the psychology team really helpful too and my therapist did help me to process a lot of stuff id not been able to at the time of my diagnosis and treatment. I guess I'm just now feeling like I don’t know whether I should be advocating for myself any differently. Everyone’s follow ups seem different and it makes it hard to know if I’m being checked up on in the best way x
I had ovarian cancer with endometrial cancer as an incidental finding (unsuspected until the pathology report came back). I was only ever followed up for the ovarian cancer and didn't see the surgeon again after the first appointment with him 6 weeks after surgery. I had CA125 done until the 5-year mark when I was discharged, but my GP could request a CA125 any time, so I asked her to follow up. I never had a scan after first appointment after finishing chemo. But that was nearly 19 years ago and things may have changed!
I'm only being seen every 6 months and they alternate between the surgeon and the oncologist. Even when my urologist thinks I may possibly have a small recurrence in my kidney 🤷♀️
Hi, I was ovarian and endometrial and was passed back to my surgeon for the endometrial element as they’d done all the treatment possible; I’ve now been discharged by them and remain under the oncologist for the OC.
It’s tricky with the CA tests as not all are reliable diagnostic tools and it also depends upon the individual. I’m assuming yours has been reactive and therefore a good marker for you?
The only scans I’ve had have been a DEXA and a CT I requested due to back issues and checking it wasn’t due to radiotherapy side effects.
If you feel you need an annual blood test then request one, I’ve always found them accommodating and happy to be led by what I’ve wanted/needed x
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Follow-up to my post 
Does everyone else get CA125 checks?
First check up after all clear - what's the usual procedure?
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