Please could any male who has had this operation message me as I am trying to find out everything I can for my cousin who has just been told he needs it. We are desperate to speak to anyone who has had this operation. thank you so much.
Hi there, so sorry that your cousin is facing this procedure.
I had a TOTAL PELVIC EXENTERATION in Jan 21 following a recurring colorectal tumour. The main thing to say is that in most cases the operation will not be done unless there is a very high chance of total cure. The surgical team will also make sure that the patient is strong enough to make a full recovery.
In my case the tumour was growing so fast that unless radical surgery was performed, many of my internal organs would have been affected. I was 53 at the time and relatively fit and strong. It IS a massive operation (12.5 hrs for me) and I had rectum, anus, prostate, bladder and tailbone removed, but aftercare is amazing and I was soon on my feet and changing my bags after about a week. I was in hospital about 3 weeks then had regular nurse visits at home for about 2 months. The loss of sexual function can be a big problem and I have long term sciatic nerve damage from the surgery, but dealing with bags is realtively easy. The 6 months of mop-up chemo I went through subsequently was worse than anything from the surgery.
I am happy to answer any questions your cousin might have...
I am very happy to chat to your cousin if it will be helpful.
If he has a Facebook account there is a group which I co/set up for people who have had or are going to have a pelvic exenteration. It is a private group so he will have to apply to join but it is very private and a safe place to ask any questions. Access is through BowelCancerUK Facebook page and simply search for Pelvic Exenteration support. Alternatively if he wants to ask specifics then I'm to chat privately.
This surgery featured on super surgeons on TV. I just wanted to say hello, and hope you're doing well. I'm full of admiration for you and the Surgeons who undertake this life saving surgery.
