New to site and diagnosis

Thanks for that information Pat. I'm going to try Dr. Dalbagni and see how I like him. We are not talking a RC yet unless the 1st pathologist really understaged the tumor. If that's the case then Dr. Bochner or Dr. Herr will be possibilities as well.

I found out today the local hospital sent the slides to MSK for a 2nd opinion and they received them on 12-3. Everything's set for the 2nd opinion on the 14th.

I may get to ask my local Uro about the repeat TURBT before my 2nd opinion. I've got some clots and cranyberry colored urine off and on for the last 2 days. I'll see how it goes tonight, but I may try to see him tomorrow just to make sure everythings OK.

I obviously took pharmacology, but don't have a degree in it. Seems to my that would be a challenge to get a degree in to say the least.

Well i would be very surprised if they didn't want a re-turb..they're one of the ones that set the protocol on that after according to Dr. Herr 75% of the slides that came in to MSK were understaged...Now thats a huge number. That doesn't mean yours were but they determined pretty quickly with me that my slides were kaka......Anyway, Dalbagni is head of uro but the guy that does the most surgery there is Dr. Bochner.
They did not do a scope on me as it was quite apparent from the slides they had to go back in and they absolutely saved my life by doing that. Dr. Herr got all my margins and no cancer cells were present after the procedure but because it was a T2 just barely into the muscle they still advised cystectomy but it gave me some time to do research on what diversion i wanted. Being female I really had to think about what i could handle and what i could not.
By the way my degree is in pharmacology also as is Sara Annes though neither of us worked as a pharmacist but it sure makes it easier to understand the terminology. A little knowledge is a dangerous thing as is trying to research every little thing about this cancer....it will give you one big migraine. I realized early on to ignore statistics as they include centers that are not known for treating this cancer..Its very specific and you're lucky you're in a place where there is a major cancer center and one which deals with bladder cancer every day.
The most important thing you can do is pick the right surgeon.
pat

Thanks for the kind words and thoughts. The Pathology certainly could have been a lot worse and I'm grateful it wasn't. I suppose it's normal early on to go from thinking everything will be OK to thinking you're going to loose your bladder or worse in a matter of hours.

My Uro not doing a 2nd TURBT prior to BCG is my biggest question right now. My appointment at MSK is 3 days prior to starting the BCG. I think at this point I'm going to wait and see what MSK says about needing a 2nd TURBT. They said the Dr. may scope my that day (and I'll bet he will). I personally don't know if they need to take more biopsy's or if a scope is enough to see how the bladder looks.

I'm also fortunate in that I'm a pharmacist at the hospital where the original TURBT was done. I know where to go, who to see, and what to do when something needs to be done. Tomorrow morning the #1 priority is find out where those slides are and getting them to MSK ASAP. Being a pharmacist has it's disadvantages also. I've seen the worse side of cancer and it more than a little unsetteling to say the least. A little knowledge is a dangerous thing sometimes. I just need to take it one day at a time and do the next right thing. Talking about it certainly helps to keep you on track.

Yes Mark, this is a very upsetting period which I recall well. It’s like every 24 hour period is filled with more unanswered questions. As tests are completed and analyzed they will be zeroing in on a treatment approach. It certainly sounds like your primary Doc was quick and on target. I wish my primary had been as good. I’m sure I lost several months before getting a different primary Doc. and necessary referrals. Please keep us advised.

Mark,

Sorry you qualified to join our club, but glad you found us.

Going to Sloan for your 2nd opinion is absolutely the right thing to be doing.

As Pat already mentioned (and you already said you are planning) you want to follow up on those slides and find out where there are and get your hands on them to bring to Dr. Dalbagni.

This diagnosis can be a scary thing no matter what your age.

Caught in early stages, bladder cancer is very treatable. It's going to be a pain in the butt for many years as BCG and regular surveillance are on the horizon. The good news is, that is very, very likely to be a looooooonnnnnnggggggg horizon.

We here call that a "Good Thing".

Since you've been lurking a few days and reading, you know we are very open to any and all questions. Keep us in the loop as you find out more and ask anything that comes to mind.

Mike