Here is my story. I was diagnosed through an ER visit cat scan with bladder cancer on 12/29/08. I had the TURB with fulmigation(?) 1 week later. The path report said stage 2 high grade muscle invasive. It was 2 cm in size. My uro took out all of it that he could see. He recommended a bladder preservation treatment with chemo/radiation. My concern was that even with 2 follow up visits, so far I have had no treatment and no appointments with oncologist or radiologist. It's been almost 2 months now. I was advised by members here to get a second opinion from Dr Konety at UCSF. I called the next day and he will see me next Wednesday! I have my cat scan, path slides and medical records for him to review that I will take with me.
My insurance won't cover him, so I am paying for the 2nd opinion myself. I am hoping that I can use his advice to push my uro to follow his treatment recomendation. He wanted a FISH test and urine cytology that my uro doesn't do. My question is, is this necessary and if so why because I will probably have to pay for it.
Also, if I have to go through chemo/radiation, I would like to know how "sick" this makes you. I live alone in a rural area, literally in the woods and I don't think I can undergo anything that would make me unable to drive, cook, etc., just basic caretaking. If this happens, can I stop treatment to recover? How do I know ahead of time what to expect? How long does it take? This part is terrifying to me. Any input is appreciated. Also, do I go on disability? Can I work while undergoing treatment? Thanks to all who responded to me in the chat and I feel much better since getting the appointment at UCSF.