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Micro papillary bladder cancer

13 years 1 week ago #3731 by Heinz
Hi Wendy,
Thank you for your reply. I was treated at the Holy Spirit Hospital in Brisbane Australia .
I was told that my BC was aggressive and a border case. BCG or Bladder removal were the options.
Had a second opinion with the same options. Read MD Anders Report three month ago and was a bit
concerned. I made my concern known to my Urologist and was told as I was clear for over 1 Year there was no need at this stage to remove my bladder. Should the cancer come back he would suggest Chemo and RadiationTherapie due to my cardiovascular problems.. despite of the advice given by my Radiologist that there would be noproblems regarding a bladder removal operation.
As for scary news I a had a few specially when I was told after my first Bone Scan that there was a possibility that the cancer may have spread . The next two Scans showed no change. I consider myself very lucky to be able to enjoy life without much restriction.
I would apreciate if anybody could give me more information about this cancer and chemoradiation.

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13 years 1 week ago #3724 by wendy

Where did you go for treatment? I wondered if your doctor consulted with any experts about the diagnosis?

I have noticed a few studies come out this past year or two on the subject of micropapillary tumors, from MDAnderson in Houston. They concluded that bladder removal was the best approach --- and here you are, clear after BCG.

Dr. Kamat from MDAnderson, who's also an advisor to WebCafe, was one of the authors. That institution has probably done the most research on rare tumor types. Not long ago Dr. Kamat suggested that we add info about rare tumor studies to WebCafe, so I researched the subject. Here's the conclusion of the info we have about micropapillary:
"...a recent study from experts at MDAnderson reported that BCG does not work on Ta and T1 micropapillary lesions, and early cystectomy, before progression can occur, is the treatment of choice. 18"

It's actually very scary information, I'm sorry to say.

I know of two other people with rare tumor types that have done amazingly well. A man with bladder sarcoma responded to BCG and has been clear for many years, while the experts say cystectomy is the best approach; a women who had small cell blc had a cystectomy and no chemo, though chemo is strongly recommended and she is fine 6 yrs down the you really never can tell!

I'm sorry to be the messenger of such scary news about micropapillary cancer, but if you search out the info on this cancer ...that is the info that comes up.

Wishing you well,

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13 years 1 week ago #3723 by Heinz
I have been diagnosed with Micro Papillary (20%) T1 G3 Bladder cancer on the 14 June 2005.
I have had 6 BCG installations leaving me with BCG induced Prostatities. Last Cystoscopy and
Urine test on the 2nd Nov. 2007. All clear!
There is a lot of controversy of BCG treatment for Micro Papillary Bladder Cancer.
I would appreciate if any body out there could enlighten me about this particular cancer.
I also suffer with heart disease, neuropathy and spinal stenosis. Despite all this I enjoy life very
much walk 5 km on the beach per day and spend time on my bicycle and swim regularly in the ocean
I consider my self very lucky to have lived 60 years without this disease.

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