Thank you for all the great information!

12 years 9 months ago #37922 by anxsis
Replied by anxsis on topic Thank you for all the great information!
Thank you.

I'm in CA, and he's in MI.

My concern is that his cancer went from zero (clean test) to t2 in less than 30 days. With a cancer that aggressive, I would like him to have the best care available.

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12 years 9 months ago #37912 by sara.anne
Replied by sara.anne on topic Thank you for all the great information!
Welcome to our "family!" We all know how helpful it can be to share our questions and concerns with others who have "been there, done that."

First, it would be helpful to know where your brother is located, geographically. There are a number of excellent places for consultation and treatment and there might be some closer to him than others.

Second, while it IS important to get treatment going, he certainly does have time to seek a second opinion at a major center that has specialists in bladder cancer diagnosis and treatment.

The most important thing is for him to get the best advice possible. Once you let us know where you are located, I know that several people will be making good suggestions for you.

Sara Anne

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

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12 years 9 months ago #37909 by anxsis
Replied by anxsis on topic Thank you for all the great information!
This is my first post.

I searched for "best expert" but didn't find any specific answers. So I would like input.

Brother was just diagnosed yesterday :ohmy: :( ...t2 (I think) bladder cancer that started to invade the muscle and apparently formed in less than 30 days. (He had a clear test 30 days ago.) I would help him get best treatment anywhere in the country.

Will you please offer your advice/input/comments?

Thank you.

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12 years 11 months ago #37436 by CatherineH
Replied by CatherineH on topic Thank you for all the great information!
Wow... that's a lot of information and confusion to digest. Sorry your day did not go as you imagined... and seems you left with not much clear direction for what's next. "Do nothing" seems drastic compared to the concern of your other uro, but hopefully he will help you sort out the events of today.

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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12 years 11 months ago #37434 by LuLu
Replied by LuLu on topic Thank you for all the great information!
Joey, I am in southern PA, about 45 minutes from Hopkins. Charlene is the best!

Well, today's appointment was kind of an unorganized mess. They had me down as a current patient, so they put me in the procedure room and were getting ready to prep me when they realized that I had never met Dr. Schoenberg. They only realized I was a new patient when I asked if anyone wanted my health history. Then Charlene took my medical history and allergies (which I carefully filled out on the forms) and then the other nurse came in and took all the same info. I assured them that I was okay meeting the doctor during the procedure in order to keep them on schedule, but they insisted he would talk to me first. Fifty minutes later, a nurse looked in and realized they had forgotten about me. I said I would be happy to prep for the procedure and forgo the initial consult, and then of course the doctor strolls in as I'm changing into the hospital gown. Nice.

Dr. Schoenberg was skimming my test results and notes from my regular uro, and then he says, I wonder if you have a UTI, I don't want to do the procedure if you have an infection. After an hour drive and almost two hours at the Outpatient Center!!! Luckily, I was clear and he took a look at my bladder. The good news is he thought my bladder looked "remarkably healthy." He thought maybe just some usual squamous metaplasia. The bad news is he thought I had already had a biopsy that came back negative for malignancy. I guess he skimmed the cytology results and thought they were biopsy results. No wonder he thought my bladder looked remarkably healthy, he thought I was the world's fastest healer I guess.

I was much relieved, but he never said anything about the "heaped up papillary tissue along the UOs" that was what my regular uro found concerning. My other doctor already had noted the squamous metaplasia and wasn't concerned about that. Anyway, he wants me to email him in a week for the cytology report on my urine, and if it's negative, he would suggest doing nothing, as opposed to "re-biopsying." Maybe now that he realizes that I was never biopsied, that advice will change. Meanwhile, my regular guy thinks the heaped up tissue is what's causing the irritation and retention, and wanted to burn off the stuff after he had biopsied it so that I would feel better.

I feel better, but still a little confused by the whole thing.

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12 years 11 months ago #37423 by Joey
Replied by Joey on topic Thank you for all the great information!
Lulu I have been a patient of Dr Schoenberg's for the past 3 years and must tell you that I think he is a great doctor and you will be in the best care possible. Charlene is also very helpful. My tumor also looked somewhat like a mushroom that was light in color. Are you in Maryland?

Joey

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