I am so glad I found this forum! Due to his symptoms, my husband had a CT scan on January 21, 2015, which revealed a tumor; it was removed two days later, and pathology determined it is high grade cancer, but the muscle tissue that was removed was thankfully clean. He had biopsies two weeks ago and pathology results were today, which revealed that it is still non-invasive, I guess (?) since it's not in the muscle, but there are cancer cells in the lining of his bladder. So, he is going to have BCG treatment, and thanks to all the posts here, I've learned more than I have to date from other sites and/or my husband's doctor. I just don't know what questions to ask. Anyway, I wasn't aware of the BCG shortage, so not sure what that will do to his treatment schedule. His doctor said that if the BCG doesn't work once, it won't work twice. Those weren't his exact words, but the short version is he recommends BCG once and if it doesn't work, the bladder is removed. My husband is stage Ta...I think that is stage 1? It just seems a little quick to me to try BCG once and then jump to removal of the organ, especially when I read of BCG treatments being done multiple times. I certainly am no doctor...I don't know if this is the recommendation due to the cancer being high grade or what.
I called a local oncology center to see about getting a second opinion, but after reading posts, I see now that oncology is kind of a waste of time based on treatment of non-invasive bladder cancer. I would really appreciate any feedback regarding second opinions, how you live without a bladder (I wanted to talk about it today but the Dr. said "no, let's not have that conversation unless we need to"...which frankly made it worse for me). I am going to keep reading the posts on this forum as it's so helpful to read about others experiences. I'm just scared and want/need to be able to be there for my husband. Today was my day to fall apart so I need to get it together again! Thanks in advance...and I really appreciate the positivity of everyone.
Hello. My husband just had this done today. It stands for transurethral resection of the bladder. Sometimes its referred to as TURBT with the last T for tumor. The doctor inserted a scope while my husband was under general anesthia and removed suspect tissue for analysis. The pathology report should be available in a week.
Since it is not clear that, at this stage, your husband would be facing bladder removal (the term is "cystectomy") the urologist no doubt thinks that it would not be in your best interest to discuss in detail things that probably have no bearing on his case. However, I know that you can't help wondering about it. Just let me say that there are many people here on this forum who have had this procedure done and are leading full lives. If you have to face this, which we trust that you won't, there is lots of information available.
The usual BCG treatment schedule is for a 6-week once a week series. This is then followed by maintenance treatments ...once a week for three weeks..every three months until two years have passed. This may be where you got the idea
that it is used multiple times. I think the urologist indicated that if the SERIES didn't work, cystectomy would be the best option. Sometimes, if the BCG series doesn't work, BCG plus interferon is tried.
However, IF the BCG doesn't work, and the cancer returns, there usually is no option but to remove the bladder. Your husband, however, is a long way from thinking about this remote possibility now.
Wishing you both the best of luck. He is fortunate to have you on his side!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Thank you Sara Anne. I am calmer today and can certainly see your point. I still hope my husband wants to get a second opinion just to be certain of his options, but I also know that he trusts his Dr. and there is comfort in that for him. I appreciate your reminding me that others have led full lives without a bladder; I think I am still just a bit in shock. My husband is only 45 years old; I worry about his quality of life but the important thing is that he has a life to live. He has a great attitude about all this...he's a tough guy. Lots of stories of amazingly strong people on this site. Thanks again and I'll keep reading.