Twinges driving me mad!

Hey folks, I hope everyone is well.
So Im nearly 5 months out of treatment and on the whole doing well.
I have some bladder/incontinence issues but energy levals etc are all back to normal. Im very lucky. But these aches and twinges coming from where I know the tumour was is driving me barmy! Its like im in a constant state of fear :fearful: Anyone else have this? How do you shake it off?
I wish there was more support for patients after treatment. People generally assume that you bounce back to normal! Its just not possible…

Sorry Shammy, only me… But I do understand. As level headed as you are, and as sensible as you are, it is almost impossible not to worry about why you feel ANYTHING in the lower abdominal area. I’ve been having chronic stomach issues since I picked up COVID and the little voice is always there somewhere in the background ‘maybe it’s your para-aortic nodes…’. That said, I think if there is anything that you can really put a finger on, as it were, get in touch with your team and talk about it. The worst case scenario is, in a sense, not that it comes back but that it either comes back or is still there and is not noticed/diagnosed and left to get worse. That’s what we are all really worried about - something that’s treatable being missed.

At my 9 months scan they noticed an area of ‘diffusion’ which was then checked with MRi and thought to be benign. At the 1 year scan they were happy to report this was now gone, and so would have been a post treatment effect. Best case scenario is that this is the case for you. Interestingly before treatment my GP and I thought I had a partial womb prolapse, as I had a heavy dropping feeling down below - this has completely gone, and I think it was the tumour, in hindsight.

One thing I also think we all find annoying is the things written on our follow up letters that are not mentioned (and therefore not explained) at the appointment. This time I had something to the effect that my bone marrow had degraded and there were signs of insufficiency in the sacral alae… In other words I’m liable to pelvic fractures. Nice of them to tell me!! I realise when I was pulling little muscles in my back close to the spine it is actually related to the pelvic bone which is weakened, so I need to take care and not try to lift things that are too heavy, and that (looking it up) I should treat with rest, not exercise.

I hope it’s nothing, Shammy, and you should also be due another check up in a month’s time, but if you are concerned please bother your team over it - you need to know, for your own reassurance as well as health, that they’re not missing anything. X

Hi Shammy

How are things? I know what you mean about twinges and aches before all this i never paid any attention to anything i just never registered anything. Now its a different story and i dont know what im supposed to be concerned about and what im supposed to ignore so i just ignore it all!!
The twinges, aches and pains are most likely radiotherapy or chemo therapy side effects as long as there’s no bleeding or discharge i dont think there’s anything to worry about.
Do you have your next appointment through yet. I got mine its in August my last appointment was March so 5 months thought it would be before that.
Have a lovely Easter :hatching_chick: x

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Glad to know its not just me! No discharge or bleeding at all, just silly me overreacting as per usual!
No word as of yet but my last MRI recommened scan again in 3 months so that should be end of May.

Happy Easter to you too lovely!!! :blush: