35 years old with single T1G3

Continued from first post above (ran out of room)..

6/16/2006 – Planning on delaying BCG maintenance until after my second opinion on 6/27..  I personally am not 100% sold on Lamm’s claims anymore.  I am also quite skeptical on his Oncovite claims.  Now I am taking Oncovite because I figure it can’t hurt, but looking at the graph of his ~70 person study for oncovite, the data does not make sense? It seems the outcome for patients taking just multivitamins is far worse that people in other studies not taking any vitamins at all.  Smells fishy. Looks like BS.

6/27/2006 – Had my second opinion with Dr. Lange at the University of Washington Medical center, he pretty much concurred with my primary urologist on the diagnosis of T1G3, also concurred that he might not use BCG maintenance in my case, even though they do believe in BCG maintenance at the UW.  He indicated they do not use immediate instillations of Mitomycin-C on high grade tumors because they treat them with BCG instead (not sure I understand this, as BCG isn’t given for a number of weeks after the TURB).
Dr. Lange also agreed with my original 5 year statistics of ~20% progression and ~50% recurrance, and indicated they could even be a little less depending on how smooth the tumor removal went.
I still find myself not completely believing either of my urologists, thinking that they are colluding together giving me favorable statistics so I don’t worry so much about negative outcomes.  I guess I still don’t buy that after having G3 cancer this affliction may just go away and not come back for the rest (50 years?) of my life.

Now I’m on the fence again about BCG maintenance.

7/15/2006 – Had another scare, had some minor stomach pain (bladder?) for a few days, of course the first thing that comes to mind is cancer spreading throughout my abdomen.. Pain is gone now… I know I’m overreacting…

7/17/2006 – I made the decision after the 4th of July not to proceed with maintenance.  Both urologists I have spoken to do not advise the further BCG treatment, my primary urologist is unconvinced it even works as claimed.  There is a lot of propaganda out there and on this website that promote Dr. Lamm’s maintenance schedule, just have to remember though that just because its on the internet does not mean it is correct.   Just because everyone else on this website claims it works and is proven does not mean it is true.  I have a lot more respect for my primary urologist now that I have spent so much time wading through all the BS on the net.

9/12/2006 – Just got back from my 6 month checkup cystoscopy, I’m drinking a beer with pyridium to manage the irritation.. heh heh  Everything looked clean, no new tumors and original tumor site looks better than doc thought it would, almost completely healed.  I asked about my statistics, doc said I’m still 20% chance of progression, but at 2 years if I am clean it will drop to 1% progression.. Ummm, that doesn’t make any sense to me?  I think these doctors might not be math wizards.

I am somewhat amazed at how my attitude has changed.. I’m just not that worried about it anymore.  Its kind of like going to the dentist now.  Its amazing how you reach a phase of acceptance.. whatever happens will happen, no point in worrying about it.

12/11/2006 – 9 month checkup cystoscopy was visually clean.  Cystos getting progressively easier (body getting used to the abuse?)

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