Welcome to Cancer Chat Siderman.

I couldn't find any recent discussions about bladder removal but I have found that [@daniels51]‍, [@Sharonna]‍ and new member [@Dhuk]‍ all have experience of BCG treatment so hopefully they will share their thoughts and experiences with you when they can. 

I hope this information we have on our website about both these treatments will prove useful as well but do give our cancer nurses a call if you'd like to talk things through with them. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

Wishing you all the best with your decision Siderman.

Kind regards,

Steph, Cancer Chat Moderator

I too had a tumour in my bladder and had TURBT to remove the tumour.what they removed was then sent to the laboratory for examination. At my follow up appointment I was told the tumour wasnt the normal type and is known for returning. To help prevent it returning he recommended BCG treatment, if that fails then the recommendation would be removal of my bladder. But they can carry out TURBT a number of times until it is obvious it is not working and removal of the bladder would be the next step. So I was booked in for BCG treatment. You go into a treatment room, a nurse inserts a catheter up through your water pipe then a small amount of the BCG vaccine is inserted into your bladder via the catheter. The catheter is removed and the treatment is finished, at least for that appointment. For the first time they will ask you to stay in the waiting room for 2 hrs as that is the time you have to hold the vaccine in your bladder. Then once you have emptied your bladder you can go home. The next treatment will be in 7 days time and if there was no complications after the 1st treatment the 2nd time you can go straight home and wait by your own toilet. It does sting slightly as the catheter goes in but for abut 1 or 2 secs.What appears to be the biggest complaint is the BCG causing inflamation in the water pipe, what I do is restrict my fluid intake to a minimum before the treatment then  about 1 and half hours into it start drinking water, so by the time the 2 hrs is up the water has found its way to your bladder and diluted it so it doesnt make your water pipe inflamed. This will go on for 6wks and is followed by a camera inspection where hopefully they will tell you that you are clear. I have a cystoscopy in 2 wks time having had a TURBT in Jan 2017. Havent found any of it too painfull. Biggest side effect I found is urgency to use the toilet, so stay close to the toilet for 48 hrs its a small price to pay if the treatment works. Good luck hope it goes well for you

Hi siderman. I was diagnosed with the most aggressive cancer in my bladder. I have had bcg treatment. As others have posted. I went to hospital once a week for 6 weeks initially . Then it dropped to once every 3 months and then once every 6 months. I cant lie i found the treatment a bit uncomfortable. It stings to pee for a few hours after treatment. You cant drink caffeine drinks for 24 hours so i had hot blackcurrant or orange. Drinking a mug of this each hour helped with stinging. Your back to normal reasonably quickly. I had headaches and felt bit achy for 24 hours afterwards.  Its 2 years now since my diagnosis and the treatment has worked so well my consultant has stopped treatment this August. I now go back in february for a camera. Hoping i will be given the all clear. 

Its a lot to take in and it is a shock. Only you can decide which is best for you. Me personally wanted to keep my bladder. I do run to the toilet more than i did but it does get better with time. 

I had a really good network of people family and friends when i needed them. I did cry in private though as i felt i needed to be strong for those i cared about. Thats why this chat is brilliant. We all know what its like and can help each other with our own experiences. I wish you well whatever you decide to do.