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Newly diagnosed, in need of advice

8 years 3 weeks ago #35118 by kcnorthstar
JT123,

To answer your questions:

1) plain and simple, you absolutly need to get a second TUR to verify the pathology.

2)Pat answered this for you and she is this sites expert on the best doctors and hospitals.

3)I got an appointment at Mayo Clinic 4 days after I called them. I just had to let them know that I had a recent diagnoses of cancer. Most major hospitals will do what they can to get you in quickly.

4)I for one went straight to bladder removal after a diagnoses of T1 G3. I had what pathology called a very deep T1 or T1B. After questioning my surgeion he told me there was a 50 - 50 chance that it was T2 but he felt I should be treated with BCG.
I did lots of research on the outcome/survival statistics of T1 G3 treated with BCG and did not like what I read. At Mayo they also recommended BCG, but when I asked if bladder removal was over treatment, they admitted that it was also a option and that it would provide the best chance for long term suvival. It sounds like you have been educating yourself up to this point. Keep up the research as knowledge is you best weapon against cancer. Do a google search on T1 G3 and do some reading. Then you can make a educated decision on what path you wish to take.

KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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8 years 3 weeks ago #35117 by sara.anne
Pat, who is our resident expert on second opinions and places to go, has given you some good advice. You are fortunate to be located so close to competent help. Some unfortunate people are stuck in Podunk Center, and it is difficult for them to get to a place like MSK.

Wishing you the best of luck.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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8 years 3 weeks ago #35108 by michael305
Good luck Jt! I hope all goes well and yes there are a bunch of great folks with great advice here.

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8 years 4 weeks ago #35106 by Patricia
JT..you've been doing your homework..good for you. And yes you are correct a Re-TURB is done from 2 to 6 weeks after the initial TURB. Often margins are not clean and reseeding takes place.
The recommendations you've received are all excellent. Personally i saw Dr. Herr and this was 8 l/2 yrs ago before anyone was doing second TURBS. I came all the way from Ohio as he's pretty much one of the best out there. He examined my slides and determined on the spot i needed a re-TURB. By the way my appt. was scheduled the following week from when i called. He scheduled my surgery for 2 days later having to undergo a battery of tests first. I was originally diagnosed as T2 which is invasive and he got in there and got all the margins and any remaining tumor. I only had one small one growing out of CIS.
I really credit him with saving my life. Dr. Herr isn't big in the small talk area but he sure knows what he's doing. Dr. Bochner is younger and extremely personable and will spend lots of time with you. I only know McKiernan from reputation which is excellent but i think Memorial Sloan sees a lot more bladder cancer patients.
You should try to schedule the second opinion right now and just go to the hospital where the turb was done and ask for the slides to be packed up (call pathology first)..have them give you the CD of the CT scan and any other work that was done. All you have to do is sign for it. Just give them a heads up in pathology..the other stuff is readily available. I hand carried mine with me..much faster results that way.
This way you will know if you were understaged or not and hopefully not...but a lot of that does go on...Herr says he see's understaging in about 75% of his cases. Thats a big number but it doesn't surprise me.
Good luck on whomever you decide. But you do want that second opinion...its cancer..
pat

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8 years 4 weeks ago #35103 by JT123
Hello everyone...I am a 66 y/o diagnosed with bladder cancer (just had a TURBT) last week by a local urologist. He said there was tumor involving 1/3 of the bladder, but it was mostly superficial. The path came back as high grade, T1 (there was a small area of T1; most was Ta). It seems like people here offer some great advice, so I had a few questions about where I go from here and would appreciate answers to any of the following:

1. My current urologist said he feels like he removed all tumor so he wants to start BCG next. But online research indicates a 2nd TURBT should be done?

2. Any recommendations on who I should go to for a 2nd opinion (I am in the NY area). I asked my urologist who recommended Dr. McKiernan from Columbia, and also Sloan-Kettering. Looking through this website and others, it seems like Drs. Herr and Bochner from Sloan are highly regarded. Anyone know about these names and any others from NY, PA, Boston, Hopkins, etc that I may not be considering?

3. How difficult is it to get a quick appointment at one of these major cancer centers? I don't know if it is worth waiting months for an appointment when residual cancer could be spreading. Also, will I have to have a regular appointment first and then followed by a repeat TURBT, or can I send them all my records, path slides, etc. and then will they make my first appointment for a repeat TURBT?

4. I know I can be upstaged, but based on the high grade T1 I have so far it seems like the treatment is BCG. Has anyone been treated with initial cystectomy for T1?

Thank you

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