Diagnosis of both bladder and prostate cancer

Hi Otley, I was diagnosed with both bladder and prostate cancer in July,I opted for bcg for my bladder and hormone therapy for my prostate with the option of either radiotherapy or removal once the bladder was sorted.I've found the hormone therapy OK the hot flushes and mood swings seem to be the norm now, I had a TURBT to remove the cancers from the bladder and then started the bcg I've found it tolerable just the day I had it and the next day was a bit uncomfortable, I finished the initial 6 bcg's just before Christmas,unfortunately had my 1st flexible cystoscope last week and it's reappeared so got to have another TURBT and then probably have to start the bcg again.Hope this helps and good luck through this journey we're on

Thanks Drunkly, I really appreciate your reply. I assume you haven't started the radiotherapy for the prostate yet. I was told, as far as I understand, that the BCG treatment had the possible effect of inflaming the prostate and thus affecting the prostate treatment. I was also told I risked urine incontininence because of a short water pipe. I have to confess I wasn't following 100% given the shock at the proposed treatment. I was told that treatment of both cancers would have been straightforward if the other cancer didn't exist. The bladder cancer was high risk and non-invasive while the prostate is graded at moderate growth. All the best and many thanks.

No problem,I was told they couldn't do anything to the prostate( apart from hormone therapy which shrinks and stops the cancer growing as the cancer feeds on testosterone ) until the bladder was stable,totally understand not taking it all in as it's such a shocker.i was also told it would be straightforward if I just had one or the other.As I said on the day of the bcg and the day after I did have to make sure I wasn't far away from a toilet as I didn't get alot of warning and couldn't hold it in very long.If you have any questions I will try and help but I'm just starting on this journey well, I'm sure other people will answer who are further on the journey than us,once again all the best 

Hi Otley 

My father in law was diagnosed with muscle invasive bladder cancer and separate prostate cancer at the same time last year. As BCG was not an option and the bladder cancer was the priority due to its stage, he had his bladder and prostate removed in a surgery at the beginning of last September.

He was diagnosed in February and had no treatment for the prostate cancer as surgery was always the preferred option in his case. He has managed very well with his urostomy since then. I understand you are asking about the alternative of BCG and radiotherapy/hormone treatment, but just wanted to give the outcome of going a different route.

Sarah xx

Hi Drunkly, Again, many thanks. I only got the treatment options yesterday and will have another meeting next Wednesday. Your experience helps me. All the best.

• Hi SarahH21, I had my treatment meeting yesterday and am going back on Wednesday to hopefully make a decision. The doctor advised that removal of the bladder and the prostate was the best option. My immediate reaction was to freak at the idea of the stoma bag but a bit of research seems to show it isn't too difficult to get used to. Is that the case with your father-in-law? I really appreciate you replying. It truly helps. All the best.

Hi Otley 

I’ve had extensive surgery myself and had my bladder removed almost 4 years ago, so we have quite a bit of experience in my family now! 

I understand that sometimes the thought of a stoma can bring an immediately negative reaction, but have to say my fil didn’t think like that. He knew he couldn’t have chemotherapy for the bladder cancer due to his heart condition, so he was very pragmatic and agreed immediately to surgery. He has done really well with his urostomy I have to say-he’s a sprightly 78-and copes with it without fuss or bother. Better than I had imagined in fact! 

I have 2 stomas myself, colostomy and urostomy,despite not having either colon or bladder cancer but I actively wanted my surgery as it was the only potentially curative option for my recurrent cancer. I couldn’t have surgery at my initial cancer diagnosis so had to have chemoradiation. My cancer recurred 9 months after treatment resulting in having everything in my pelvis removed. 

Personally, having been through cancer twice, I would always pick surgery over any other option offered, to give the best possible chance of a successful outcome. From my own experience, surgery was impossible after radiation as all of my organs were stuck together inside, and it had damaged my colon. (My surgeon attempted a hysterectomy but stapled me back up without proceeding after seeing my insides!). I then waited to heal and had the bigger surgery to take everything in one go. 

It’s a very personal decision of course, and we all have different ways of looking at things and assessing what we are prepared to deal with. I didn’t want chemotherapy, which in my case would have only been palliative or any other form of ongoing treatment. I was lucky to have an excellent result from my surgery, and my stomas don’t stop me living a normal life-I just go to the bathroom differently now! They don’t stop me travelling abroad or doing anything I used to do before. My father in law is getting out and about, driving, shopping etc and caring for his wife just as he did before. He got used to things very quickly, as did I.

Best wishes for your treatment going forward, whichever route you decide to take. 

Sarah xx

Hi Sarah, I can't explain how great your reply is. This is the first time I have been on an online community and I had no idea I would get such a helpful response. I am grateful you have gone into such detail. When you have a chance, I would like to know what the downsides of the stoma might be. How long do you have to empty it? I ask because I like my football, theatre, cinema, concerts and don't like the idea of trooping to loo every x number of minutes. Also, how do you manage at night? All the best to you and your father-in-law (I like the sound of him).  

No problem-I’m happy to answer anything about stomas that I can-I knew nothing about them myself until I got 2 of them! 

I go to the loo the same amount of times to empty my bag as I would have gone for a wee when I had a bladder. Two days ago I sat on a plane for 4 hours and went to the loo once…and I was drinking on the plane. The amount of times you need to empty the bag does depend on how much liquid you drink, but there’s no running back and fore to the loo constantly. The bag has a little tap at the bottom, so it just takes a minute to go to the loo, turn the tap, empty and you’re done. 

All the activities you enjoy are still very possible with a urostomy. I would have no issues with any of them. I just go to the loo before I sit down in the venue-last time was for a Sarah Millican gig-and wouldn’t need to go again while watching the show. 

At night I connect my bag via a length of tubing to a larger bag which holds 2 litres of liquid and is clipped to a stand beside my bed. During the night, the urostomy bag on my tummy drains into this larger bag, so no getting up to go to the loo! I have never produced more than 2 litres of wee during the night-I’ve come close though!-so the night bag has never burst or anything like that. Even if I reached the limit of the night bag, my urostomy bag itself would just stay full till I woke and emptied everything. 

I can lie in bed any way I like-and bear in mind I have 2 bags to contend with-and move about, lie on them etc. To be honest I don’t really notice them at night. Unless one of them leaks….and that is the downside of a stoma. Leaks can sometimes happen, although my fil has never had his bag leak during the night, or the day for that matter.

I have occasionally, so I have a waterproof mattress protector under my sheet. Usually, it’s happened if I haven’t taken enough care in fixing the bag on properly, so it’s more user error than anything else! But it’s very rare in the 4 years I’ve lived with this. 

Sarah xx

That is really encouraging. I am really grateful for the time you have given me. I applaud your good taste: Sarah Millican is great. All the very best. Nick