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newly diagnosed

2 years 4 days ago #52431 by sara.anne
Those are excellent places; also, USC Keck, Univ of Chicago, Mass General.....And my expectation, were I to go to any of them is that the physicians who would handle my case would be experts. Not all of them are listed as senior staff.

You might also want to contact Dr. Piyush K. Agarwal at the National Cancer Institute in Bethesda. His group is very interested in "complicated" cases of bladder cancer. Besides being an excellent clinician, he is a nice person.

https://ccr.cancer.gov/urologic-oncology-branch/piyush-k-agarwal

Again, good luck to you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 4 days ago #52430 by churilla
CT scan without contrast is concerning for involvement of pelvic musculature. Mom is being referred to another surgeon. Current doesn't treat this involved case. I have a question. If you had ability to travel to facility who treats high volume of bladder CA, which locations would you go to and to whom? There's Memorial Sloan Kettering and MD Anderson and others but there's so many physicians. Thank you again for your response.

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2 years 4 days ago #52429 by sara.anne
Sorry to hear about your mother's diagnosis. First, very few urologists specialize ONLY in bladder cancer treatment. But you DO want one who treats a lot of bladder cancer. If you do not feel comfortable with her current urologist, of course, now would be the time for a change. If you do feel comfortable you might want to wait until you have a firm diagnosis before seeking a second opinion since you would know then exactly what questions you might have.

As for Johns Hopkins, I am not personally familiar with the urologists there. However, these would seem very qualified to treat bladder cancer:

http://urology.jhu.edu/bladder/member.php?trinitybivalacqua/

http://urology.jhu.edu/bladder/member.php?michaeljohnson/

I note that Dr. Armine is based at Sibley in DC....I believe that the others listed are in Baltimore.

Your mother is fortunate to have you at her side. Best of luck to you both!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 4 days ago #52427 by churilla
My mom was just informed via abdominal ultrasound that she has a 10.5cm in diameter mass in bladder. She is awaiting CT scan results from Friday. Before we proceed with cystoscopy/ biopsy/ TURT, we would like to obtain a 2nd opinion especially with physician who treats many bladder CA. This urologist does have experience with urinary tract CA but he treats other urological conditions too eg. prostate, dysfunction..We live in Washington, DC area. JHU has been mentioned in the forum as one of the reputable locations for bladder ca tx. However, I did not find a urologist that we would go see. Dr. Armine is a JHU urologist however, we had a negative experience with her with my dad for prostate cancer. Appreciate your responses.

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