Thank you. That sounds less miserable. So glad you had good success. Hope we’ll have the same. We’re just thankful to be able to get BCG although we have to travel three hours to get it. He’ll be six weeks post TURBT. Is that typical?
I left as soon as the instillations were over. I was told to try to keep the BCG in for two hours if I could. They said that the bladder is a relatively small organ and that the BCG would hit all of it without my "rolling around."
Anyway, it worked. I have been cancer-free for over ten years!!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Thank you for comments. My husband starts BCG next Tuesday. Everything I read says they put the BCG in and have you turn on your sides, etc for two hours. The nurse said that was old school. She said he could leave the clinic after they put it in. Has that been everyone’s experience?
I have T1HG bladder cancer with CIS and I was offered the same options at that point, my urologist really wants me to have a RC and told me that the BCG treatments would be a waste of time for me in fact he gave me a 70% chance that the BCG would NOT work. So I decided to go with the BCG option where you get six treatments in six weeks which is one treatment per week. Well after my six weeks were up I had to wait a month before my urologist would scope me as my bladder had to heal from the BCG treatments. So when the time came to be scoped which was May 31st of this year he seen two small tumors and some reddish areas which may be CIS, so I had to get scheduled for another TURBT which I had on June 27th of this year and the results from the pathology came back that the tumor was cancerous as well as the reddish areas and still a T1HG, so he said that the BCG did NOT work for me. But please bear in mind everyone cancer is unique to them and just because the BCG did not work for me does NOT mean it will not work for you.
I Really am trying at all cost to keep my bladder, so my next step is my urologist has to do another biopsy to get a piece of my bladder muscle to see if it is invading my bladder muscle if so it will change my course of treatment if not there will another type of treatment as I am going to be doing a clinical trial chemo which is VERY risky but I prefer to keep my bladder.
The big advantage with the RC once it is done and you are fully recovered the odds are very high you will no longer have cancer and the doctor visits will be at most twice a year and you are living just about a normal life.
I know where you are coming from and it is a VERY tough decision, the other advantage you have you are married have kids whereas I do NOT I live alone which makes it even harder to go through such a major operation.
All I can say is do what is BEST for you! No one else but YOU!