Radical cystectomy & sexual activity in men

Hi Coojee. Can't help sorry, but just giving your post a bump, and hopefully someone will pick it up. Best wishes.

Hi Coojee my husband has literally 2 weeks ago had a neo bladder,  prior to the surgery he had an overnight surgery to protect his prostate as the cancer, although a T3 had not gone to prostate. Originally they were going to remove as obviously it could if spread there. I don't know whether this could be an option for you? X

Not for me, I have stage 4 & it's spread to the prostate.

Omg!! Which type of cystectomy are you having.?

Its a radical cystectomy. Prostate, seminal vesicles, lymph nodes.

Unfortunately, what you describe is a common consequence of bladder and prostate removal, and will be a bigger problem the younger you are. Talk about this with your health team and don't be shy. There are several options Viagra being one of them. My willy is still there but totally useless and is cleaned twice a day with a saline solution as there is normally some mucous discharge. I get no sexual response at all - impotent - but I've come to terms with this, and at 74 it is not such a major problem and I can live with it. My partner understands. As someone very wisely said on this forum sometime ago being affectionate and loving can be done in other ways. Do discuss this candidly with your doctors/health advisers, and also with your partner. Try to work through the difficulty with understanding and compassion. Good wishes.

PS: Chemo: this is usually done either before or after surgery. Mine was a very short course (3 cycles) post-op. My cystectomy was carried out last March.

Thank you for your reply. Its very hard work. My wife does not want the operation, feeling my cancer can be handled by diet. I see no choice but to have the operation. I will have had 4 chemotherapy cycles before the operation, then a ct scan to check for spread. Then the operation if they think it will help. No mention of further chemotherapy, but after 3, its pretty tough, especially the first weekend after. Im 63, my wife is 49.

Diet is very important but probably, at this stage, it is like closing the stable door after the horse has bolted. I've now changed my diet considerably: no sugar or very little; no sugary cakes; plenty of fruit and veg; no meat; plenty of grains and pulses. I am sure your wife understands the value of diet. It will certainly help to keep cancer in check, and will strengthen your immune system - a kind of natural immunotherapy. However, if your cancer is grade 4 I tend to agree that you may not have much choice and trying to engineer a cure through diet may be far too late. I should have changed my diet years ago. Renewed good wishes.

Omg!! Which type of bladder are you having. My husband has had a neo bladder, which is made from part of the bowel so he won't have a bag outside of his body. It is so hard watching a loved one go through, this we know we have a long way to go but we have a good support system . Some people have another option via chemotherapy & radiotherapy.  I think this is the route rily went down??? Xx 

Hi Coojee, saw your post just before going away for 3 days. Just want to say how sorry I am that your wife appears not to be fully supporting you in your [to me utterly reasonable] decision. I hope she can find the sense to get some counselling or similar help to come to terms with the situation. The marriage vows I took were 'for better or worse', and your situation seems to me to be challenging but hardly as bad as some.

I think Veteranrunner's  thoughts on diet are bang on the nail.

Best wishes, 

Denby