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I've been upto date with my cervical screenings I had hpv in last 2 so was sent to gynaecology for investigation which they said all was fine no problems.

8 months later I started having back pain, pelvic pain and heavy abnormal bleeding so went to doctors, she did a internal/swabs checked my stomach, took bloods and ordered ultra sound.

Ultrasound picked something up on my ovary so they thought I had ovarian cancer so was then sent for ct scan which found something on my liver so then had a mri scan to check all area which showed liver was fine but there was fluid in my uterus and something at the top of my cervix just inside uterus so then they thought I had uterine cancer so was booked in for a biopsy which then was told it was cervical cancer 3c1 adenocarcinoma.

I was then sent for pet scan and to Western park for appointments and started radiotherapy and chemotherapy which I finished oct 2023.

3 months later had mri and results to be told there was only 2cm left in cervix and they was hoping on next mri it will have gone so had next mri 3 months later and got results 15th April 2024 to say it had grown to 3cm I was absolutely gutted, couldn't stop crying and overthinking things and of course goin on Google which I know I shouldn't just makes things worse.

I've been told I can try therapy drugs which only keeps it from growing won't get rid of it or I can have pelvic exenteration Which absolutely terrifys me I mean is this a guarantee to kill it all and is it safe has anyone else had this can you tell me more, I've got N appointment on Tuesday to ask questions too.

I'm just waiting for my ct scan to check everything but the waiting is scary and hard due to it growing as could be more aggressive and spread everywhere.

Hope anyone can give me advice or message me I would be very great full

Thankyou louise x

  • That sounds like an ileostomy rather than a colostomy-the bags for those tend to need to be emptied more often. A colostomy has firmer output (poo) and I’ve personally never got up in the night to empty it or set an alarm.

    The bag can push off your body on occasion/leak but it’s not like this happens every day. You can have days when there is nothing in the poo bag at all.

    When I said leaking never stops, I meant that even after 4 years bags can burst etc,so you can still experience this, not that it happens all the time or even frequently. It’s really ok though nothing is perfect.I’ve not made myself understood very well here! 

    Sarah xx

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  • I'm not sure don't remember names of these bags yet and oh right I see so they don't leak or bust everyday but occasionally we'll that's not too bad then.

    Thankyou xx

  • Oh no, they absolutely don’t burst or leak every day! It’s an occasional thing, but all I would say is it’s unrealistic to hope that they will never burst or leak.

    In the early days after surgery stomas take time to settle down as they heal, so can change shape but once they do settle that’s usually how the stoma will look permanently. 

    A colostomy is one type of stoma, and an ileostomy is another (they are made from different parts of the intestine). A urostomy is formed when the bladder is removed, so again a different type of stoma.

    Sarah xx

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    Cervical Cancer Forum

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

  • Right that makes much more sense to me now you've been a real help thankyou will keep u updated but if all good to have surgery think this is my only option for a good chance 

    Louise xx

  • Hi I too have had a pelic exentaration in may 2024 due to my cervical cancer returning from 2001. It is a big operation and I was really scared and worried. I’m living with 2 stomas and I’m getting through it slowly. But living like this means I’m cancer free as all the cancer has been removed. I’m so greatly for what the surgeons have done for me at the qe. After 2month I’m still recovering and am very tired. So yes your goin be scared, worried like I was and can’t believe how far I’ve come and you can do it too.