Possibly having exteneration surgery

Hi Cookieshell 

we have a very similar situation with my husband. He’s booked in for surgery next week and we were given the option between a partial pelvic exenteration to remove the rectum and part of the left pelvic wall but save the prostate and bladder or go for the TPE. This is because the tumour was originally involved in the wall between the rectum and bladder, and although he’d had a good response to treatment and the post radio scans showed it had retreated, there’s a chance that some cells were left behind. To get clear margins they’d have to go very near to the main nerves and even then there was an increased chance of not getting the R0 margins they want. It also meant there was a chance that he’d have bladder problems as a result of the surgery.  
We actually ended up speaking to 2 surgeons as the original surgeon we met is going to be away the date of the surgery so we were assigned to one of his colleagues. My husband had already decided on the TPE as it gave the best chance of getting clear margins and ultimately a cure, and thankfully when we met the new surgeon he was in full agreement it was the right choice for his situation. He actually said that in his opinion, both from a surgical/oncological perspective but also for long term quality of life, he felt that it was a good decision. He also assured us that from a recovery perspective there would be little difference between the surgeries. 
It was a tough decision…my husbands only 46 and it will definitely be life changing but his priority was to give himself the best chance of a cure.  it is a very personal choice and everyone is different. 
we’re also looking at a 3-4 week stay as we live over 2 hours from the hospital but I’m seeing it as a positive that he’ll have the best care for longer. 
I hope this has helped a bit…I know how horrible it is to have to make these choices and wish you both all the best. 

 SarahH21  That’s great news that they now consider you cured! It’s what we’re all aiming for and thank you so much for sharing your story. It definitely helps and has given me and husband hope! Xx

We all want that hope, and I’ve always tried to be a positive thinker-even when facing the surgery. I’d met people in real life who had it done-one still going strong a couple of years longer than me, so that helped. I never considered refusing surgery-and I have seen that happen to others who were just too scared to do it, and others who put it off and now can’t have it at all. But we are all different as you say. I probably have encountered more people than most because of setting up my support group specifically for this surgery, so I’ve seen many different experiences in the last few years. 

I’m still here to enjoy having a new grandchild born last year and that kind of thing is absolutely priceless for me. I’ll be seeing her on a video call later today and feel so blessed to be able to have that! I believe your husband is giving himself the best chance possible, and I hope his surgery goes well.

Sarah xx

Thank you so much for your reply really appreciate it. Making notes on incontinence pads etc. I trust all is well with you 

Thank you my husband is deciding due to complications of the bladder after surgery going for complete removal also to give best chance with margins he’s in next Tuesday surgery weds 

I’ll be thinking of you Wednesday and hope it all goes well. X 

Good luck next Wed. You'll be on my thoughts.

Hi All 

we got a last minute teams call from the surgeon today and now the operation has been postponed due to hubby being on the fence. So the coordinator called and hubby said he would go for the big operation but was indecisive as he said would be great to come out with 1 bag instead of 2 so referred to surgeon and she wanted to hear from Lee that he was totally on board with the TPE and that was what was happening. Of course now operation pushed back so could be 25th April due to cross wires. However the tumour is stable and shouldn’t cause a problem but rules are 2 further scans now before op unless he gets a cancellation before then, so slightly deflated but also a breathing gap for hubby 

I'm sorry. This kind of thing is very frustrating. I'm sure they just want to be sure he's happy with his decision. 

Hi Susan13

yes she wanted to see he was 100% on board with decision and no coming back from TPE which is understandable. He is fine to wait a bit longer as it all seemed so quick after our meeting last Monday. She agreed it was the best decision to take. We may still get a cancellation. Will know next week.