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.
