Questions from a BC beginner.....

Well, now I just feel silly. Dr. Stephen Campbell at the Cleveland Clinic is in my network..... guess that this is a no brainer...

Thats great...i love Dr. Campbell...many here have had their surgeries done by him
my.clevelandclinic.org/staff_directory/7/Staff_6257.aspx
Pat

John,
Not sure i would go with an oncologist for second opinion. I would want a bladder cancer uro/surgeon. And i don't know what insurance you have or how far you can travel to be in network....Is Memorial Sloan in network?..or Cleveland Clinic? Maybe all this is a moot point anyway...you have a very good doctor who was trained by the best and you're at a hospital that does deal with bladder cancer.
And remember Stats are only as good as the surgeon and the hospital..take em with a grain of salt.
My surgery was 4 l/2 hrs away at The Cleveland Clinic and i have been followed up here locally by a especially hard to get into Uro group (but i can just drop in and give urine samples if need be)...i also have an Oncologist which just depressed the heck out of me sitting in those waiting rooms with really sick people...i cried every appointment. Finally asked my Internist if he would follow up on the blood work which is all my Oncologist was doing anyway. My follow up CT scans, chest x-rays I do here and have them sent to Cleveland for additional confirmation of pathology. They've made a couple of mistakes locally reading them as they are not familiar with an Indiana Pouch...one pathologist said i had gallstones......NOPE....just didn't know what he was looking at. And Cleveland was very quick to let me know i was just fine.
Pat

Well, now I just feel silly. Dr. Stephen Campbell at the Cleveland Clinic is in my network..... guess that this is a no brainer...

Thanks T.R. and thanks again to Pat and all others..... with the return of my energy level, I have carelessly entered into the dark and dangerous world of insurance coverage roulett. Words that don't mean what Webster thinks they mean, (maximum out of pocket???) and a complete new vocabulary. Too bad that there is so much at stake.

My insurance co. will only pay $25 for an "out of network" 2nd opinion. There is however, an in network local cancer treatment center, (Hahne Center In DuBois Pa.) that seems competent. Dr. Carmine Marchioli is the oncologist there. I will find out how many bladder patients they/he are treating, and perhaps use them for a second opinion. Plan B is to search the country for the best "in network" bladder cancer Doc, or find out what a 2nd opinion costs, and just bite the bullet and pay. I will also check out the other treatment possibilities in the Pittsburgh area.

I am very comfortable with Dr. Huang at UPMC. He was a "fellow" at UC Norris, has published much in this area, and made many presentations.... His resume went on for pages, I didn't really understand all of it, but it seemed impressive. He is happy for me to have a 2nd opinion.

As I see it, you don't know what you don't know. My case may be open and shut... nothing to talk about, no questionable options. My Doc. has given me the stats, and I have found more stats here.... It seems pretty straight forward, but how would I know.

This line of thinking brings up another disturbing fact..... 10 year stats..... early RC = 78% survival, trying to save the bladder first, then RC = 64% survival. Not as good as I first thought. My Doc. says that best survival with RC, but still chance to save the bladder and have no recurrence. Not an easy thing to get into perspective.

Oh well, I guess that it is a process. Thanks again, John

Pat - I totally agree with you - John - if you have the desire and would feel more comfortable going to one of the major treatment facilities for bladder cancer then do it. If we would have been more educated at the onset of my father's dx, we would have pushed him to do the same thing and head to Cleveland. I was just throwing the option out there. I am currently seeing (my father-in-law also has bladder cancer and his surgery and treatment was done at Duke and he lives 4 hours away) how difficult it can be to get to appointments and just to deal with all the little (that can turn big) things that happen with thise disease. When something seemed off with my dad - he called his uro or onc - my FIL calls his GP(which I do not agree with) b/c the other 2 are so far away and he can't just pop in to see them.

The main thing is to get the care that you feel most comfortable with - whether it is across the street or across the country. And to be educated so you know what you are getting and that there are options out there.