Carole, Dan's story is both powerful and enlightening. It didn't exactly help me make the decision to have a radical cystectomy because in my personal situation I couldn't avoid one, but it made me feel a lot better about my decision and my future.
Dan is a guy who really did his homework in a systematic and thoughtful way. I always appreciate people like that--people who do so much groundwork that it helps make our choices easier.
Someone here.... Rosemary?... coined the term "bladder-optional living". It's not so bad and it's not so hard. None of us have a time machine or magic potion to take away our bladder cancer. What to do about it is sometimes a difficult and personal decision. But, in my heart of hearts, I would probably do what Dan did even if my cancer was superficial.
Oh, and the Dr. Stein alumnus Dan mentioned that he just missed meeting was, of course, me...
Hello again. There's lots here who can jump in and answer your questions better than me, but, when I was googling the term "FISH" to better help you at the BLCWEBCAFE homepage, I ran across "Dan's Story" which might shed some light for your son. He calls his story "To RC or not to RC, that is the question." (RC meaning radical cystectomy which is what the doctor is referring to in removing the bladder as a last resort).
You might want to read this and see if it would be appropriate to E Mail this article to your son. I think he could possibly relate to it.
This is that Mom again. My son has completed his round of Mitomycin 40 mg and recently had a cystoscopy to check things out. These are portions of his e-mail to me with the new updates:
I didn’t get the news I was hoping for today after Dr. Grubb’s cystoscopy. I was able to watch the monitor while the camera was in my bladder, and there is a new “area of concern” at the very top (12:00 o’clock) of the bladder. It looks a little like a wart, which is different than the manner in which CIS presents itself. We have two options:
A) Have a surgical biopsy (under anesthesia…same thing as before) and TUR (transurethral resection). Wait four weeks. Begin a 6-week cycle of BCG. The problem: my history of bleeding after these procedures precludes BCG treatment.
Begin a 6-week BCG cycle immediately. Have a camera cystoscopy (under anesthesia at the hospital) after that cycle. In the event the cystoscopy determines a biopsy / TUR is required, they can just do it then while I’m already loopy.
He is going for Option B and has scheduled six BCG treatments. Dr. Grubb is going to confer with Dr. Kibell, a senior member of his team, but I have already scheduled six BCG’s starting next week (finishing on MON 08/13/07). I had to leave a urine specimen, too, and they’ll perform cytology and FISH (Fluorescence In Situ Hybridization) tests on the sample.
Dr. Grubb mentioned that the leaders in the field have become more aggressive in recommending bladder removal (cystectomy) in patients that are not responding to any of the standard intravesical treatments (BCG / Mitomycin / Interferon). Sure would like to avoid that.
Has there been any discussion on this website on bladder removal? FISH?
My son has been in contact with his doctor and has opted for the 40 mg protocol treatment instead of the 20 mg. He feels confident his onclogist will do the 'au protocol' for administering the Mito treatment. His oncologist said he can use this protocol for my son's treatment. Nothing is scheduled yet - still waiting.
I forwarded your information and associated websites to my son and he forwarded to his doctor/oncologist.
You are just the greatest with all your information! I printed off the information on both the websites and forwarded the websites on to Todd. I am sure he will ask about the new treatment technique.