Alternatives to Cystoprostatectomy

Hi Tiger and welcome to the group. Several members here have had this operation and should be along to help. Many here have had alternatives such as BCG. A lot depends on the stage and grading. I went the radiotherapy route. If your husband sees an oncologist they may consider something else. Best wishes 

Hello tiger

You'll not anything until you meet with the surgeon. Be careful with the research sometimes Google doesn't give the best advice. I've had a RC with prostrate removal . This is a major operation with an extensive recovery period. I live well with my stoma. It is life changing to a certain extent. I wouldn't be concerned about body image. Getting rid of the cancer is the priority.

Best wishes 

Mark

For them to recommend surgery straight away implies high grade, possibly muscle invasive. If BCG was a feasible treatment, they would normally offer that as an option. You will know more about the stage, grade and type of cancer when you meet the surgeon, who will probably be a bladder oncologist. Certainly ask about alternatives such as radiotherapy/chemotherapy, as Rily had, or any suitable trials. Bear in mind that going on a trial may mean taking a greater risk than having the recommended treatment. You may need to weigh up the chance of cure, or risk of being incurable, against the side effects of surgery.

Being allergic to plasters is not necessarily an issue, especially now that surgery is often done robotically with small incisions. If he does have surgery, he may well be eligible for a neobladder (a type of reconstruction) rather than a stoma. This is what I had, aged 57. It's the closest to normal function, without having to wear a bag. Either way, although surgery is tough and takes months to recover, normal activities can be resumed afterwards. For men, the biggest issue is usually the risk of erectile dysfunction, but an expert surgeon will do their best re nerve sparing, and there are ways to overcome this problem. 

Although it is major surgery, most people cope well - the reality is often not as bad as anticipated. Best wishes for your forthcoming consultation.

Thank you Rily I really appreciate your response 

my name is actually Kate but when I registered it wouldn’t allow my first name 

tiger is a family nickname name when we are being brave but it looks a bit weird on here, got to at least laugh at that I’m just so new to this steep learning curve 

Hi Kate,Welcome to the group.It is a shock at first but you will get advice and support here.It’s a good idea to write down any questions you may have for the surgeon.I took a notebook in and my sister as an extra pair of ears.It is easy to come out of the appointment  thinking ‘why didn’t I ask that ‘ as it can feel so overwhelming at the start of diagnosis.Feel free to ask anything on here as there is usually someone who can help.Hopefully the surgeon will explain everything fully.If your partner does need surgery keep in mind that you can lead an active life once you have recovered.Best wishes for Tuesday.I hope you find this group useful,we are all here to help.Jane x

Hi Tiger,

Like your husband I was the fittest I'd ever been when diagnosed - lost count of all the 'but you look so well's. I always said 'so it's a good job they've picked it up then.' Fitness is the thing the surgeons want because bladder removal is hard work for the patient - they compare it to running a marathon.

Body image is something that changes anyway as we age. But the simple answer for your husband is that if he needs a stoma and bag nobody has ever noticed I have one (though I tell everybody who wants to know). If he's a walker his cargo pants/shorts will easily cover it though he may need a bigger size - I did after the op as the stomach did swell a bit, though I had also lost weight because of the chemo). I recommend supportive special stoma pants (with inside pocket to hold the bag as it fills). They also trim one's appearance.

Despite osteoporosis, and also because it's good for it, I walk everywhere - Meindl walking shoes are all I wear these days & for the past 8 years - I'm 72, 69 on diagnosis. There are people swimming the channel and mountain climbing with stomas. I'd imagine once he is fit again after treatment (whatever he has) walking in Spain won't be a problem.

I'm allergic to everything too - they write it on your notes and although I did have a reaction to chemo the gp calmed it down with a week's steroids and I carried on with a tweaked dose. 

Side effects of treatment - well they vary with everyone but if there are any they'll have seen them before and will sort them out - as they did with me.

Complications of surgery - ditto last point. 

Advantages of surgery for me - the cancer is out, standing up to pass urine - quick and easy (obviously not an advantage for your husband) - never having to wake up in the middle of the night - we use a nightbag to collect urine and so get a good night's sleep. I'm still enjoying life.

After my operation I focused on walking and as I was weak I used my walking poles in the park - couldn't risk a fall and wanted to pick up speed asap. I still do, and my osteoporosis specialist told me a couple of weeks ago my forearm bone density has even improved because of it. 

You're at an early stage with this and even though you must have faced  some of this before with the kidney I expect you have a lot of mixed emotions. 

We're here to reassure you that bladder cancer can be overcome and you can have a good quality of life after it. My husband feared the worst when we were at your stage. It wasn't long after the operation that he turned to me and said 'I can't believe how quickly we're back to normal.'

I hope once your husband is treated you'll soon be saying the same thing.

All the best,

Latestart x 

Hi Tiger, I already replied to you on your blog, then I read this and wanted to add a bit. If he’s only got one kidney, they may fit a ureterostomy rather than a stoma. Try to find out - we were expecting a stoma and it was only when they took the dressings off a few days after surgery that we realised it wasn’t! It does affect body image at first, but my husband mostly felt glad to be alive and pain-free. His bag is on his waistline, so we had to change his wardrobe - trousers with elasticated waists & pants with lower waists. The patch that sticks to his skin causes a bit of redness, but when he changes it he lets the skin get some air for 20 minutes plus uses a powder to reduce the rash. He manages it all really well. 

Dear Miranda t , re your husband's rash: I have sensitive skin and my stoma bags are from Welland and impregnated with Manuka honey to reduce irritation.

My stoma nurse back home after the op  changed my bag to one with an adhesive I was allergic to and it took a while to get my skin back to a reasonable state. The original hospital nurses recommended steroid scalp lotion for the rash as well as doing a patch test pre-op and originally specifying the correct bags. 

Coincidentally I also have seborrheic dermatitis so use a similar lotion for that already - different bottles so as not to cross infect) and that works well.

The local nurses recommended  calomine lotion which takes a little longer  to dry but is quite effective. I have never tried powder.

I had never heard of a ureterostomy but I guess the adhesives and urine on the skin  will be similar to the problems with stoma bags and output.

All the best,

Latestart