Waiting for pelvic reternation

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/203540/expectations-when-going-home-after-total-pelvic-exenteration-surgery

Hi Brownie72

Welcome to the forum . I have liked in a thread that you might find helpful . It covers the type of surgery that I think you have been advised you might need .

I will also link in SarahH21. She has a lot of good information and great at sharing with us on the Bowel thread .

That is such a long time ago to get a recurrence. So sorry you are having to go through this but hope they take great care of you .

Take special care ,

Court 

Thank you being a woman the surgery is different to men. Ive been told i need my vagina pelvis cervix womb and ovaries removed. I already have a stoma abd reconstructed surgery after rectal cancer. Alittle overwhelming

Hi Brownie72

I had a total pelvic exenteration more than 2 years ago now, so will be happy to help if I can with any questions you might have. You don’t say what type of exenteration surgery you’re having-there are 3 different types (anterior, posterior and total) but I imagine it will be either a posterior exenteration, where you end up with a colostomy, or a total exenteration where you end up with a colostomy and urostomy (if your bladder is also being removed). Either way, it is massive surgery, and the recovery is long, but it can be a real life saver! 

Please feel free to ask anything you’d like to know, and I’ll do my best to help based on my own experience. (Thanks court for the tag).

Sarah xx

Sorry Brownie72 I hadn’t noticed your reply to court when I posted. 

I also had my cervix, womb, ovaries, Fallopian tubes and vagina removed, so I understand the op from the point of view of view of a woman. Are you retaining your bladder?

Sarah xx

I already have a illeostomy as had my rectum removed 10 yrs ago my cancer is located pelvis top end cervix they havent said what i am having yet. My main worries are do they have to take bladder and can eill i be left without lady parts sounds silly 

They havent said tbh ive been referred to st marks in harrow i think its a total

Brownie72

It doesn’t sound silly at all-these are valid concerns before this kind of surgery, and I had them too. What I can tell you is that from the “outside” I look absolutely no different at all. Everything was removed from the inside. I have an end colostomy. I didn’t have cancer in my colon but it was damaged by previous radiotherapy and I told the colo rectal surgeon to take it as I wanted to try and give myself the best possible chance of getting rid of all areas of potential concern. 

My cancer had spread very rapidly over my womb and bladder after a failed hysterectomy 9 weeks previously, so my bladder had to go. If you’re used to dealing with an ileostomy, you would cope with this if it has to happen. Sometimes they don’t know fully till you get on the operating table what can be saved and what can’t. I didn’t have a vaginal reconstruction as I didn’t want more surgery, but maybe that’s an option? They would use grafts, possibly from leg muscles, but I’d frankly had enough done! 

Sarah xx

Sarah can i ask your bio says from outsode you look perfectly normal. Im not sure i could cope with another bag having my larhe intestine and rectum removed and then plastic surgery to re construct my buttox i am not sure mentally. Do you have a partner are you sexually active. I have told my nurse if i dont need bladder removed and i can have a vagina ill do it but not sure im strong enough for anything else. Can i please join your fb.

I’ve messaged you Brownie72

Sarah xx