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Bladder Cancer: High Grade Neuroendocrine Carcinoma (Small Cell)
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.
Navy Bill
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@navybill Gosh, it seems that if this condition is rare and aggressive, i agree that it could be eligible for the immunotherapy. Regardless of the stage it is in! It there any way to get a second opinion? By UCSF is that Uni o CA at San Francisco? If so, can you get to Stanford for another opinion? Or, UCLA Med Center? Good luck to you,
Ginger
@navybill I think it is not too rare as to those who actually have it as part of an Amyloidosis reality. But the diagnosis is quite rare. Mine is very slow growing, and will probably never be treated apart from the catheters I use. It is larger (10%) than normal. My Life expectancy exxxxpired about 40 years ago.
Yes they say mine is not going to kill me but it’s necessary to have surgery. They said it will set my clock back another year and a half. They say it’s slow growing and as lead they can do surgery to get rid of it. So they are going to do the surgery on my liver