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Sep 17, 2018 · Bladder Cancer: High Grade Neuroendocrine Carcinoma (Small Cell) in Neuroendocrine Tumors (NETs)

An MRI in February 2018 showed a tumor in the bladder and a Transuretheral resection was performed.
A biopsy was done and the microscopic findings showed a widespread High Grade Neuroendocrine Carcinoma (Small Cell) with Possible smooth muscle invasion.
After this was discovered, I went to an Oncologist in town which referred me to UCSF. A PET scan,MRI and brain scan was performed and did not show any other tumors or indications elsewhere. The Dr. felt it could have been caused by pesticides like Agent Orange, which I was exposed to, but who knows.
I was told that this was a rare cancer and there was not a lot of information on it.
I was put on four cycles of Chemo-therapy. Each cycle consisted of 1st day CysPlat,, 2nd day Etopicide, 3rd day Etopicide and four days later CysPlat again.
I finished Chemo at the end of August and was checked by an Urologist that specializes in the cancer treatment. I was told that their first recommendation was for the removal of the bladder, prostate and any lymph nodes in the area. After a Cystoscopy was performed and there was no evidence of any re-growth, I was given a secondary choice of 4-6 weeks of radiation as the next step.
Since the detection of this condition was in the very early stages; it has not been assigned a “stage.”
Since my bladder is functioning properly at this time and I have no other problems, my last choice would be having it removed.
Radiation would be my next choice, however that procedure carries a lot of risk in the side effects.
I asked about any studies or treatments using immunotherapy as an option. I was told that any clinical studies were currently for stage 3 and Stage 4 patients.
I also read that there had been positive results for these patients. Logically, my thinking is; if it works on stage 3 and Stage 4 patients, why couldn’t this be my next line of treatment?
Even if a study is not available,couldn’t I choose immunotherapy under the “Right To Try?”
From what I was told, this type of cancer is rare and aggressive and there is not a lot information about it.
The recommendation about surgery and radiation is based on very little historical information.
There has got to be another option.

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