Bcg

Hi . Welcome to the community and our corner of it. I'm sure you will get lots of support and advice here to help you get through this. I have not experienced BCG, I took another route, but we have many here who have and will be able to help, and I am sure will be along when they pick up your post. Best wishes.

Thanks rily have found some information on here nice to know am not alone I’m still trying to get my head around having cancer I only found out in October and I never had any real symptoms I’m looking forward to being part of the community

Hi Tat1965, welcome. 

BCG is a course of treatment. You will initially get 6 weekly doses. Around 4-6 weeks after the last you will get a cystoscopy to check to see how it is doing. You might then get another TURBT if they see some suspect areas and want to check them out otherwise you will go ahead with the next 3 maintenance doses. Some people have had a further 6 doses when the first appeared not to work but everybody is different.

The full BCG course can last up to 3 years with 27 doses

I've had my first six but the cysto highlighted an area of concern so I'm now waiting for the consultant to decide whether I go ahead with the thnext 3 maintenance doses or have another cysto with possibly a bit of diathermy

Hi Tat1965,Welcome from me and I hope that you will get lots of help and support from this friendly group.Love and best wishes.Jane 

Hi Tat1965, in my first year after diagnosis 2017 I had the same. First TURBT removed initial tumour grade 2 non invasive, second TURBT was biopsy and to ensure clearance. Third was after 6 doses of BCG, once again they took a biopsy to check for any return. 2nd and 3rd biopsies were clear but I did have a reoccurrence 6 months later. In my case each time docs have removed reoccurrences (3 reoccurrences one each year 18,19,20) but consider the BCG treatment is working as tumours have all been low grade and getting smaller. I'm having doses 22-24 this month, and yet another TURBT in February. After the first 2 my TURBTs have been day surgery and none have caused me much in the way of pain or discomfort. BCG is a long-term treatment option and not everyone can tolerate the infusions but thus far it has been my preference rather than removal. Wishing you good luck xx

Thanks herothedog given me a great insight to the treatment like you I don’t want removal I’m only 55 so gonna go for long- term xx

Thank you Jane 

Thanks Martyn all reply’s have really helped and given me some great advice. 

Hi Tat1965, there is at least one other option besides BCG and drastic bladder removal. My OH had a bladder-full of papillary tumours, G3 Pta CIS etc by the time he got seen: usual routine of TURBT etc. Tried 6 BCG but already had a new papilloma by the 6 week flexi. Consultant shocked us rigid chirping about bladder removal like it was nothing more than a haircut, but offered trying Mitomycin local chemo as an alternative. Despite not being able to tolerate the Mitomycin heated as was considered ideal, and not being able to hold it in for the full time, it has worked really well for him so far. So far as in, 2 flexis at 3 month intervals clear, also one at 6 months, next will be 3 months again as there was a red area. That can be just one of those things, but it shows you how well you can be looked after with frequent checks to be certain all is well, or treat it again if not. And for some people if Mitomycin is not right, there are at least a couple of other varieties of chemo that can be tried. It is put in the bladder in the same way as BCG.

Hope this is helpful, don't get pushed into surgery if it is not the right path for you for now.

Taking a friend along to appointments is always good to make sure you do not miss something, either that medics said, or you meant to ask.

All the best, Denby

Hi Iam in the same situation start my 1st BGC treatment on the 8th  Jan hope all goes well for everyone undergoing treatment I am now  over the initial shock at 54 years old and never been poorly in my life I will update after each treatment good luck