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Husband's T-1 High grade bladder cancer

1 year 3 weeks ago #58473 by sara.anne
You asked when is he best time for a radical cystectomy. The answer is BEFORE IT SPREADS. Our president, Cynthia, has commented that is amazing that some people treasure their bladders over their lives! While this is not what you would wish for, most patients do well after a radical cystectomy no matter what diversion they choose. People on this Forum with bladder diversions do scuba diving and drive race cars!

A second opinion is a good idea. My urologist said that if he ever got to the point where he recommended radical cystectomy he would insist on a second opinion. Your husband should seek a place that does a LOT of bladder cancer patients.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 3 weeks ago #58466 by Alan
As Sara Anne would say; "This is not something to fool around with"! Recurrences, especially with high grade need to be aggressively treated. I second your thought about a second opinion for fresh eyes and possibly any new ideas. Gemcitabine has been a good alternative to BCG.

If that fails, yes, I know it is not what anyone wants but the radical cystectomy is the answer. I am not sure what can be said for your husband if it comes to that. Perhaps a little more time and the second opinion will help. In between lets hope the new agent works.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 3 weeks ago #58464 by Tamcro
My husband was initially diagnosed with, I believe it was T-1 High Grade Bladder Cancer in July 2017. He had the resection done and followed with 6 weeks of BCG. In July 2018, it came back with the same results, T-1 High Grade and 6 more weeks of BCG. In January 2019, another reocurrence. This time the treatment was a chemo wash injected in the bladder at the time of resection. This did not go well at all. We were at the ER 3 times within a couple of days due to urine retention and blood clots that he could not pass. He was hospitalized for a week and they did a continual bladder wash. During the stay in the hospital, he contracted 2 multi drug resistant organisms in his urinary tract. He wound up having to go see a Infectious Disease doctor and had a PIC line to receive daily antibiotics for 2 months, after he left the hospital.
His most recent reoccurence was in September, which meant another resection. The pathology results came back again T-1 High Grade, still non-invasive (thank God). When we went to the doctor for the follow up appointment, his recommendation was for bladder removal. My husband is only 63 years old and is devastated by this. He asked the doctor about treatments again. The doctor has agreed to allow him to go through treatments but using intravesical gemcitabine instead of the BCG. His doctor also suggested he get a 2nd opinion, which we have an appointment next week with a urologist that a friend recommended.
Anyone have information on the intravesical gemcitabine treatments? Or thoughts on when is the right time for bladder removal? He has stated he really doesn't think he can do it. I worry that it will cause him to go into a deep depression. When he was initially diagnosed with bladder cancer, he almost had a nervous breakdown.

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