First post on this forum - mother just diagnosed

Thank you Sara Anne - No, my mother never lived outside the US (I've lived in Africa, I understand the schistosomiasis connection with this type of bladder cancer). Her risk factors include being a hairdresser, thus exposed to analine dyes, and a life-long history of recurrent UTIs and cystitis.

Thanks for confirming Moffitt as a good choice for this very rare cancer. Do you have any knowledge or opinion about Dr. Dipen Parekh at the University of Miami? uhealthsystem.com/doctors/profile/134106

He, and the center appear to be very good. Her urologist has referred her to Moffitt, I would like her to get a second opinion and am looking for a center in addition to Moffitt.

Thanks again -

Sue

My second post:

My mom, age 75, life-long history of cystitis finally had cystoscopy after six months of recurrent or continual UTIs that antibiotics were not treating. She had no blood in her urine and in frustration went from her urologist back to her PCP with an inch-thick file of prescriptions and lab requests and said "I'm in pain, and these antibiotics are not working." She was sent for a CT pylogram, quickly followed by an in office cystoscopy, then an attempted TURBT which was abandoned when it was apparent that the entire bladder was involved.

Path results shared yesterday: Grade 3 (high grade) pT3 tcc (tcg?) poorly differentiated squamous cell carcinoma. Basically her entire bladder is a tumor.

Awaiting referral to oncologist and surgeon at Moffitt Cancer Center in Tampa, FL. for radical cystectomy and lymph node dissection.

Can anyone share their experiences with this diagnosis, this cancer center and any of its surgeons and oncologists? It does look like a very good center for this type of cancer, offering the Davinci robotic and laproscopic surgery.

Can you offer advice or share your story? I've asked her to consider a second opinion on histology from Johns Hopkins. And of course, we are hoping and praying that her lymph nodes are clean! I think the University of FL- Miami might be good for a second opinion. She's located in central FL - Ocala.

This is shocking. I appreciate your help -

Kitty's daughter Sue