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New Diagnosis - Small Cell Carcinoma Bladder Cancer

1 year 3 weeks ago #54336 by Cynthia
Atb,

Sorry you are having to go through this. Sara Anne gave you some very good advice and I hope you do decide to have a second opinion at a large center of excellence for bladder cancer. You are dealing with an rarer bird than most of us here. Small cell needs the care of a doctor that sees nothing but bladder cancer.

Bladder cancer has a very high rate of reacurrance that is the reason the bladder is removed. I can remember thinking when I was diognoised at 48 with stage 2 TCC that they took out the tumor why should I have my bladder out? So I found a clinical trial with radiation and a boat load of chemo to save my bladder. The cancer came back, I still wasn’t ready yet as it was caught early so I tried BCG. Again it came back this time it had spread to the urethra limiting the type of diversion I could have. The pathology found that my bladder was full of CIS and several tumors had started to form within the two months since the last were removed. I was incredibly lucky that no stray cells lead to spread.

Today finds me living a very full life and I spent the weekend spoiling my first grand child. Yes there was adjustment and it was not easy but it is doable. I am so happy I finally realized this was not about keeping my bladder but keeping my life.

Know I wish you well and hope you keep us updated on your progress.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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1 year 1 month ago #54249 by atb1963
Thank you, Sarah Anne. Your kindness and input are greatly appreciated. It is looking like I should reconsider my resistance to a total cystectomy, but am not quite there yet.
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1 year 1 month ago #54247 by sara.anne
I am very sorry to hear of your diagnosis. As you are aware, there are multiple studies on small cell carcinoma of the bladder (so I won't list them for you again) and the very latest, best recommendations are for chemo/total cystectomy. Since you have already read these, you do understand that this is a very aggressive cancer and you should want to get rid of all of it ASAP. At least that is what I would do. This is not a "wait and see" situation.

You may also want to get a second opinion at a MAJOR bladder cancer center, since this is a rare condition and you want to deal with physicians who have experience with this. Such places would include MD Anderson, Memorial Sloan Kettering, Johns Hopkins, University of Chicago, and NIH among others. There are clinical trials going on at the National Institutes of Health on rare bladder cancers; to see if any might fit your situation, contact Dr. Piyush K. Agarwal,( This email address is being protected from spambots. You need JavaScript enabled to view it..)

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 1 month ago #54246 by atb1963
Just diagnosed with small cell carcinoma bladder cancer, based upon path report from recent partial cystectomy to remove single 1.8 cm bladder tumor (T2, clear margins, invading inner half of muscle wall). The partial was necessary to determine whether tumor was muscle invasive, and, in my opinion, also served the valuable function of removing the tumor. Oncologist strongly urging chemotherapy, as expected, and that will start in two weeks. Oncologist clearly would have preferred that I had had neoadjuvant chemotherapy followed by total cystectomy, but that didn't seem like right thing to do given that muscle invasive question was still unclear and no previous indication of small cell carcinoma. I am hoping that after the chemo I can simply be on regular monitoring with my urologist plus whatever ongoing testing (CT, etc.) the oncologist recommends. I am 54 years old, otherwise in very good health, and hope to keep my bladder. Am I crazy for not going ahead with a total cystectomy after the chemo, given some of the studies that indicate this is the optimal approach for small cell carcinoma bladder cancer?

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