High risk bladder cancer diagnosis

I had that choice aged 56. This is a common dilemma, weighing up the pros & cons alongide your personal preferences & situation. I had many sleepless nights over it. There is a risk that if BCG is not effective, you might have a muscle invasive recurrence meaning more aggressive treatment & a small risk that it will become incurable. I was told that 50% patients choosing BCG will end up having surgery, possibly with chemo too. 

Anyway, for various reasons I chose surgery straight away & was able to have reconstruction (neobladder). That was 12 years ago & I have never regretted my choice. It was tough at the time, but gave me the peace of mind I wanted. Apart from different toilet habits, life is much the same. I have to use catheters to fully empty, but don't mind that at all. The worst aspect for me is having to get up at night to empty. I don't set an alarm & do have to wear a pad in case of leaks. 

Not everyone is suitable fo reconstruction, so you have to be prepared that you might end up with a stoma. There is a third option, that is less common, which is an internal pouch (like neo) but has a small opening (often in the navel) to empty via a catheter. 

Hope all goes well for you.

Hi Janine,Welcome to the group.I had muscle invasive Squamous cell which tends to be aggressive so I had a cystectomy in 2019.Because of an existing bladder condition neo bladder wasn’t thought suitable so I had a stoma.I haven’t had any problems adjusting to life with one.The stoma nurses teach you how to care for it and once you know what to do it becomes routine.I did find the recovery tough as it was a bit up and down and very slow.Once you feel better though you can get back to a full life.It usually takes most people a few months to recover.If you do go for surgery it will help to get as fit as you can beforehand.Best wishes Jane 

Hi Pegasus, my husband has had 6 BCG treatments and then 2 separate treatments of 3 maintenance BCG’s, while it wasn’t totally pain free it certainly wasn’t as bad as he expected, it can vary for different people but his was definitely not too bad. Jean.

Hi so sorry to hear your news.  I have bladder cancer, havnt been offered any treatment yet but seeing doctor tomorrow so hopefully some news for me, keep in touch so we can discuss what we both end up doing.  Best of Luck x

I wish you the best of luck and yes please do keep in touch

Thank you this is good to hear, I wish your husband all the best

I did start going to the gym but my head has gone off a bit due to the news. I will get my butt back in there and stop ruminating 

Thank you for your reply

Thank you so. much, there are just so many questions and unless you have been through it it is difficult to answer. 

I read a few horror stories concerning BCG and how painful it can be for some people. I feel ashamed today as I was scared of a CT scan and having the radiation injection. I came out of the appointment and just broke down. 

The hospital was meant to call Tuesday to ask for my decision, no-one called. Staffing issues in the department, only one nurse who is over worked and underpaid.

I am a single mother who works full time. How have people got on working with the BCG treatment please

Hi Pegasus - I have had 12 mitomycin and 12 BCG treatments.  I worked throughout.  As the BCG went on it got a bit harder but that was justt urinary frequency for a couple of days after the treatment nothing worse than that - it wasn't really painful other than bladder spasms and stinging for a few hours post treatment. 

That is good to know, how are you now