4 months 1 week ago - 4 months 1 week ago#58912by Jack R
As you noted SCBC is rare & aggressive. A suggestion of "no additional treatment" can be hard to accept without a seeking a second opinion.
The National Cancer Institute (NCI) is currently sponsoring a clinical trial, "Testing the Effectiveness of Two Immunotherapy Drugs (Nivolumab and Ipilimumab) With One Anti-cancer Targeted Drug (Cabozantinib) for Rare Genitourinary Tumors.
Rare includes : Bladder Adenocarcinoma, Bladder Mixed Adenocarcinoma, Bladder Small Cell Carcinoma, Bladder Squamous Cell Carcinoma, Chromophobe Renal Cell Carcinoma and others.
The study identifier is NCT03866382 (the 0 is a zero) and the web site for more info is:
There are many locations taking part in the study. These are the people working on the rare cancers. Perhaps you can make contact with the principal Investigator at a site near you and learn more about what the study involves and how it impacts older frail patients.
In seeking information about clinical trials that might accept me, I found it was tough to get answers, calls were seldom returned, but once I did establish contact the insights I gained made the effort worth while.
I am not sure that this is what you were hoping for, but I hope it helps.
General info about clinical trials is found starting at Clinicaltrials.gov
What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back...
We are sorry why you are here but, I want assure you your post is being seen. First, pat yourself on the back with help for your Grandmom. Sometimes these issue are tougher on the caregiver. As you aware small cell bladder cancer is very serious and rare. You mentioned she is frail and at 95 I can see where the health team suggested no treatments such as BCG. First, lets hope that somehow the TURB got all of the tumor. Also, a second opinion just for peace of mind might help both of you or ask those hard questions of the health team for more advice/options. Beyond that, any guess by me is fruitless as every one is different on how our bodies respond to treatments as we are all volunteers and not doctors. Fell free to ask more questions, rants, good news, bad news etc.
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.
Hello! New here . My 95 year old grandmother just got diagnosed with t2-stage 3 small cell carcinoma of the bladder which from what I under stand is very rare and highly aggressive. Due to her age and being very frail they are suggesting no treatment other than the resection they already did along side the biopsy . I guess my Question is , what is anyone’s experience with this cancer with no treatment . I know age is not on her side . I live next to her and take care of her along side my family and children and wonder what we are to expect