My husband has been given the choice (updated scans permitting) between a partial pelvic exenteration which would allow him to keep his prostate and bladder but carries a risk of R1 margins or a total exenteration which would mean both a urostomy and colostomy but increases the chances of clear margins. With the partial he has a 1/4 chance of R1 margins vs 1/8 for the total.
I was hoping to get some insight on the difference in quality of life between 1 and 2 stomas. As his wife my initial instinct is to do whatever increases his chances of a cure but this has to be his decision as it’s his ongoing quality of life that is impacted. He is 46 and other than the cancer, is fit and healthy. I’m trying to support by researching a bit more but it’s hard to find anything on quality of life differences between one and two stomas. He’s made peace with the colostomy but the urostomy in addition to this has knocked him.
We know the recovery will be long and hard (and nothing is guaranteed) so wanting more of an insight into long term quality of life differences between these options. The surgeon has said it has to be a personal decision and is willing to perform either surgeries.
Hi RoseInTheSun
I’m speaking from the viewpoint of having had a total pelvic exenteration, so have had 2 stomas from the same surgery 5 years ago. I therefore can’t compare the difference in quality of life between one and stomas -I’m not sure you’ll find many who can, unless they have had their stomas formed via separate surgeries at different times.
Having the total exenteration allowed my surgeons to achieve very clear margins which is what I hoped for. I could have saved my rectum as there was no cancer in my colon, only radiotherapy damage, and it was suggested I just go for bladder removal-an anterior exenteration. However, I asked for everything to be taken at the same time to limit the chances of any recurrence and my colorectal surgeon agreed. I know others personally who have chosen just to go for one stoma and save their bladder who have not been so lucky.
I find living with two stomas perfectly manageable, and have never in the last 5 years had any issues requiring hospitalisation, nor a single infection, nor any parastomal hernias. Most important I will reach my 5 years from surgery in 10 days with no cancer recurrence.
It makes little difference to me dealing with 2 stomas rather than one in the practical sense-it takes me slightly longer to deal with my urostomy rather than my colostomy, but I soon got into the way of it and it’s a quick process for me nowadays to deal with both. Losing my bladder has the plus point of never needing to get up in the night for a wee-as a 62 year old woman that’s a big plus! Being otherwise fit and healthy would stand your husband in good stead to go through this surgery and recover-though it is a long recovery process and takes time. I was older when I had my surgery and had also gone through major abdominal surgery just 9 weeks before my op so wasn’t physically in the best place. I still coped.
I’ve never regretted my surgery, nor having 2 stomas instead of one- I travel abroad, swim, do what I could do before I had any stomas. I do understand what a personal decision this is-the thought of the surgery was very difficult, but my focus was always on giving myself the very best chance to survive and my surgery gave me that chance so I’m personally glad I went for everything out. I’ve seen my daughter get married, seen my granddaughter come into my life, I have zero pain or complications from surgery and I consider that overall I’ve done very well and am a positive story. I just have a different way of going to the toilet than most people!
Hope this might help a little in showing the positive side to 2 stomas, although I realise there are differences between the genders.
Sarah xx
Thank you sarah,
I just read your message to him and he said it was nice to hear a positive view and it did seemed to help a bit. Think he’s slowly adjusting to the news.
Thank you very much! X
Sarah
(was drinking a bottle of rose wine in the garden when i created my account which is why I’m roseinthesun. Realised afterwards it made it sound like i was called Rose 
)
Hi Sarah
I like your username-I’m hoping to do plenty of that if the summer ever arrives here! There are many of us in the group who have either a colostomy or a urostomy but not so many of us who are double baggers-there are some though, so hopefully they’ll pitch in when they see this.
There’s no denying it’s a big deal, and it’s tough going through the surgery but the pay off for me has been well worth it. It was to give me a 50/50 chance of cure, though later the odds of surviving went down for me, but I’ve done way better than anticipated and I know others from outside this group who are further out from surgery than me and still doing well.
As an aside, my father in law was diagnosed with bladder and prostate cancer (2 separate cancers) and had both removed and a urostomy formed in 2023-he was 78 at the time, but his general health and fitness got him through and he is well. He copes fine with his urostomy and has not got any issues with it.
Sarah xx
Hi Ginger Ale and welcome to the group.
Yes, a total pelvic exenteration means having the bladder removed. (An anterior exenteration removes the bladder but keeps the bowel, and a posterior exenteration removes the bowel but keeps the bladder).
When you have bladder removal it can be possible to have options-a neobladder which is created from your intestine, and doesn’t involve a bag outside your body, or a urostomy made from part of your bowel where you have a stoma formed and a bag on the outside of your body. have a urostomy, and didn’t have the option of a neobladder but I do know others who have.
It’s a big surgery, but for me it was definitely worth it! Are you having some more scans or tests to see if surgery will be possible for you?
Sarah xx
