Bladder Cancer

Hi Ellie

I had a stoma at the end of March.

I’m managing well.

The secret is to get s good fit over the stoma, both for comfort and to reduce chance of leaks. So far, so good.Hope all goes well for you If you need to have bladder removal.

Kiko

Ok Kiko, Thankyou so much for your response

It’s not actually for me, it’s for my father - they’ve given him just a few days to make the decision whether to have BCG Treatment (which will mean a lot of hospital visits & uncomfortable treatment for the next 6 months or longer) - or to have his bladder out! The latter seems rather drastic! He really doesn’t know what to do - so the family are all trying to help him decide by finding out what we can   

I tried the BcCG treatment which worked gir 2 years.

After that period, I had another very aggressive tumour, so was recommended to have bladder removal.

Initially I was devastated as I had bern doing really well with the BCG  but 29 weeks down the line, I realise that it’s not the end of the eorld and I now have peace of mind.

The silver lining for me is now sleeping through the night!!

Ok Thankyou- is the BcCG treatment ‘bearable’? Or is it very uncomfortable? 

I suppose it varies from person to person.

It’s uncomfortable for s short while but after 24-58 hours I felt 109%.

1. Sorry! Should say 24-48 hours!!!

Ok Thankyou so much for your reply’s ️

Hi Ellie,Welcome to the group.I’ve had a stoma since 2019 and don’t find it a problem.Specialist stoma nurses show you how to look after it at first and you learn how to clean it and change the bag/pouch.I’ve only had a few leaks and nearly all were right at the beginning of having a urostomy.At night the bag plugs into a much larger night bag so you don’t have to get up in the night.For me this is the best part of having a urostomy.Shortly before bladder removal I was getting up every 10 minutes or so at night.The operation for bladder removal is major surgery and recovery usually takes a few months.It’s good to be as fit as possible before surgery.I can’t help with.BCG but reading on here peoples experiences vary.Some sail through with minimal side effects and others find it irritates the bladder.There Is support and advice here so ask any questions.There is usually someone with experience to answer them.Best wishes Jane 

Hi Ellie, my husband has had BCG, he initially had 6 weekly treatments, then 3 maintenance followed by flexible cystoscopy which showed all ok so a further 3 maintenance and now waiting for a further cystoscopy to check no recurrence of cancer cells.

The BCG treatment went ok, on the first one he had to wait at the hospital for the full 2 hours that you have to hold the instilled BCG in your bladder, all was ok and for the rest of them he could come home after treatment, just can’t urinate for the 2 hours then take care with hygiene as it’s a live virus.

For him the treatment was definitely bearable, a bit fragile on the day and felt the need to urinate more so we didn’t plan anything full on for a couple of days but there really were no major problems.