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In Desperate Need of Help

12 years 3 months ago #19392 by grampadonut
i,m using dr bouchner @ sloan-kerrtering..good bedside manner and as well know..just a suggest
but..please get 2nd opinion

dx t2-g3

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12 years 3 months ago #19390 by Patricia
Marne.......Memorial Sloan one of the tops in blc...Dr. Harry Herr did my TURB...who cares about his bedside manner..he's one of the best surgeons in the country.
His wife is also great especially with women Dr. Machele Donat
Also Dr. Bernard Bochner specializes in urologic cancers
There is a number for new patients to call on these sheets.
Get that second opinion

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12 years 3 months ago #19378 by DIB

When I was first told by my uro in early May 2008 that I had a small tumor in my bladder I had to fight freaking out. Then came all my research (a lot of it via this great website) and then came information overload (reading stuff; getting three opinions from docs), etc. Now I am calm and sorted out (most of the time).

Karen & Rosemary are absolutely right. Everyone should get a second opinion. And since you are in NYC, you have access to some of the best in the country.

Many people here (and elsewhere) have gone to Harry Herr at Memorial Sloan Kettering; he has written more papers and done more research on BC than anyone else and is recognized as one of top BC guys in the world. And I have heard you can get in to see him fairly quickly. He has a rep for no bedside manner and others have suggested two docs who work with him closely: Dr. Sagani and Dr. Rebanoi (sp?). But go get a second opinion, and then a third if the second varies greatly from the first. But then you have to balance more info overload. Most insurance companies pay not only for a second opinion but, if it differs from first, will also pay for a third.

And write down all your questions and bring them. What works for me is that I type my questions, reread them and revise them, bring two copies to appointment and give one copy to the doc at the start of the visit. I then take notes of answers on my copy cause after I leave I forget what was said. The two docs I have done this with seem to appreciate being able to get right to my questions; saves them time.

And if you can bring someone with you: partner, friend. Two sets of ears are better than one.

Good luck and focus on what you have control over, not what you do not. (If only I could always take my own advice).

Stay on an even keel and good luck,

Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.

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12 years 3 months ago - 12 years 3 months ago #19370 by Rosemary

Karen has given you the best advice, seek a second opinion!!

Other than that, my guess is that you have the lowest stage & grade of Bladder Cancer which is sometimes known as the "nuisance cancer" because it has a very high rate of recurrance and of low malignant potential.

That being said, the overall protocol on your situation is to never turn your back on it. There is always a possibility (not saying a probability) of the cancer progressing in stage and grade. Stay on top, get a second opinion, get a copy of your pathology report and keep talking to us!

Take care,

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 3 months ago #19369 by momof4
First thing to do is calm down...You have to be thinking clearly....

Now, I would tell you regardless of your past experience, that everyone should get a second opinion...that is where you need to put your energy and focus...You are lucky in the fact that you are in or near a major city, and there are several Dr.s at John's Hopkin's and at New York Presbyterian which is affiliated with 2 Universities Columbia and Cornell...

Others will chime in here to give you their recommendations...My best advise it to try not to get all hyped up, even though you are scared...you need to have a clear head (even if it isn't yours) Do you have a friend or family member who has a calm spirit, and can get things done? That is the person you want at all of your appointments, and to help you with scheduling etc...

Wishing you the best,

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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12 years 3 months ago #19368 by Marne
Last August I returned from Europe and had what I thought was a bladder infection (burning upon urinating). Saw my gyn and she prescribed med which didn't help. After three tries I finally felt better briefly. After about 2 weeks it flared up again and i made an appointment with a urologist. By the time I got there I was running fever. After blood, urine and cat scan they decided I had kidney stones. When the doctor went in with the scope in November (to remove the stones) he noticed a small irregularity in my bladder which he removed. At my visit he told me I tiny low grade transitional cell carcinoma but that I shoudldn't get upset it wasn't a big deal and he would monitor me. He was so low key I wasn't concerned (fool that I am). My first 3 month checkup was fine however I just had my second checkup and now he has found two small spots. He will remove them Thursday but is still telling me he doesn't think its serious and will continue monitioring me. I have started researching and am freaking out. I'm on an info overlaid and terrified.

Does his approach sound resonable?
what questions should I be asking?
Does anybody have a recommendation of a specialist in the NYC area I can go to for a second opinion?

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