Afraid

Hi Doukas

I am sorry to hear that you had a diagnosis of endometrial cancer land I hope that you are recovering ok from your surgery. I am pleased that yours turned out to be an early stage cancer and that no further treatment is needed. 

After my treatment finished I was also put on three monthly check ups and this seems the normal thing for many ladies on here. My check ups were for 2 years face to face and I am now on patient led follow up. 

My check ups involved quite a bit of talking each time and then a physical check. This was basically feeling my tummy and also a quick internal. I had no scans or blood tests however was told that if I presented with any concerning symptoms, then these would be done. 

This is how my check ups went although there can be some differences between hospitals. 

Check-up appointments after endometrial cancer treatment- Jane's story - Macmillan Online Community

After treatment has finished it can feel a bit in limbo really- I have not had a recurrence but remain under oncology for a total of 5 years. I see myself as someone who has been treated for endometrial cancer and I am recovering from that treatment. 

I also found that after treatment ended I felt worried about recurrence and I think we all feel that way. For me the diagnosis and treatment felt a bit like a whirlwind and it was only when it was done the processing could begin. In my experience you don't just bounce back and it can all take time. 

What I did find with my check ups- that were all done by my CNS- was that although I did get anxious each time- they were reassuring. After the first one, I knew what would happen and it all became a bit of a routine. Maybe you could get in touch with your CNS and talk through your worries. 

Alternatively do give the Support Line a call. They are there from 8am-8pm each day.

Jane

Hi Doukas, it’s interesting to me how different hospitals and different doctors/nurses deal with and speak about things. After my op (2022) I was told I could regard myself as cancer free, so that’s the attitude I adopted. (Btw I was grade 1 stage 2 from post op histology). I was offered checks every 3 months for a year and then they wanted to switch me to patient-led follow up but I asked for in-person check ups and they agreed to that. I then asked for 6 monthly and then annually. It sounds to me like your hospital is being really thorough and caring in offering up front in person appointments for 5 years! I’m now 3.5 years post op and am due an annual check later this month. I’m aiming to continue annual checks for another two years, I asked if they offer scans and was told no as there’s nothing to scan. My oncologist’s upbeat and positive approach has really helped me move on. If people ask me how I am, I reply that as far as I am aware I am cancer free. For the first year post op I did imagine that every little ache or pain or funny feeling might mean I had cancer, but I really can’t be bothered to do that nowadays, I regard it as a waste of valuable energy! 

Hi there

I was also told on Monday this week that the treatment of hysterectomy had been successful for my 1a grade1 cancer and no further treatment required. I was expecting to be offered regular follow ups or scans however my consultant explained that I am now straight onto patient initiated follow up for 3 uears. I was a little concerned about this but was reassured when he explained reason being that scans were less likely to show a reoccurance before any physical symptoms. 

I was advised any physical symptoms or even niggles or worries and I can contact CNS for FastTrack appointment. So trying to get on with life now.

I do agree with Jane, I thought I would be ecstatic and of course I'm happy all the cancer removed however being cancer free feels strange to adapt to - I think this is because we feel a little ''left alone' to get on with it, without regular reassurance from health professionals. However I'm trying to be reassured and accept these are normal feelings. I'm sure as time goes on we will settle x

I think I would rather be on a patient initiated follow-up, rather than every 3 months, as it allows you to get on with your life and forget about it for a while. That doesn't mean you are burying your head in the sand - but I think it's important to have some normality and avoid too much stress. Stress can make you ill too, so getting on with it might be a better way to go, without interminable check-ups. Well done and best wishes.

Hi Doukas, Whilst it's important to have monitoring, I think too much monitoring can be negative and surely you have some say in this? As other posters have commented, things differ from hospital to hospital and it's clear you are being looked after. However, it's your body, your life - and a lot women only have patient initiated follow-ups, after thorough advice about what to look for and be aware of, so maybe talking it through with your team might help? Maybe you could have slightly longer intervals between these check-ups? You are the master of your own body, after all.....good wishes.