From my patient perspective, with questionable BCG effectiveness (open to interpretation) for the past 36 months, I question a number of things that seem to be missing from your timeline. My course of treatment has been somewhat different from what you describe.
Terms "papillary" and "CIS" describe the most common bladder cancers, and are not mentioned.
Diagnostic tests, specifically CT Scans, Reverse Pylogram and Cytology are not mentioned.
No mention is made of a bladder wash with mitomycin (or other drug) following TURBTs.
All or some of these may have been done, but just not included in your narrative; they CAN BE important items to consider before simply changing to a different intravesical agent such as Gemcitabine.
I faced the situation where it became unclear if BCG was going to do the job. I have only one kidney, and that limits my options. A workup at a major cancer center, as has already been mentioned, looked beyond simply treating with bladder instillations and opened possibilities NOT available with my local urologist.
It is good that a large percentage of bladder cancers can be successfully treated by general urologists in our communities. At some point, I found it reasonable to consider a workup by doctors specializing in bladder cancer, who had tools beyond those of the local general urologist.
Your doctor should be able to refer you to a super specialist clinic at a NIH Center of Excellence or a major university/teaching hospital for a second opinion. A second opinion can be good for you, and may be welcomed by your current doctor.
I am still remitting and relapsing, but finally beginning to see some progress. My local still provided regular treatment, but that second pair of eyes keeps watching and advising.
BCG FAILURE is term that is much debated. A Google search will provide much info. I suggest one of many possible articles for review:
ALWAYS talk to your care team about what is best for you and your situation. Don't accept what you find online as fact or a best practice.
The high level second opinion was a real plus for my situation. I hope this helps you and your doctor decide what to do next.
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...
Welcome but, we are sorry you keep having reocurrences. "At my 1st follow up cystoscopy (4 months later) small small red patches in a different location in my bladder were found." Those red patches are CIS, or flat lesions and are ALWAYS high grade. With this many re-do TURBS, I would get to a top flight bladder cancer center and I am not knocking your current URO. I believe most on this board would gently mention the possibility of the need for a cystectomy after 4 cases of tumors coming back that frequently. However, one more look with fresh eyes and the possibility of another approach or attack without knowing more facts for a second opinion might be in order. A teaching hospital or major center such as MD Anderson, Sloan Kettering etc. Keep posting as others I am sure will chime in and may even disagree with my assessment. None of us are doctors so it mostly the school of hard knocks and experience.
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.
I am 71 and female, former smoker, quit in 2004. I was diagnosed in Dec 2016 with non-invasive low grade transitional cell bladder cancer. I had a single tumor 1.5 x 1.75 cm removed. At my 1st follow up cystoscopy (4 months later) small small red patches in a different location in my bladder were found.
I then had another surgery, (April 2017) where these patches were removed, and determined to be malignant cells, and cauterized. Had 1 series or 6 weeks of BCG following this. 1 month after completing the BCG series, I had another cysto and some small tumors were discovered. Another surgery (Aug, 2017)was performed with the results of the pathology showed malignant transitional cell Bladder cancer still non invasive.
I then had another 6 week series of BCG and went for follow up cysto in Nov 2017. Results were many more small lesions with 2-3 looking like tiny cauliflowers. I was again scheduled for surgery and had the tumors cut and lesions fulgurated. Still non invasive low stage cancer. Urologist's opinion was even though recurring, these were more of a nuisance than a danger but still should be removed. I was put on maintenance BCG 1 per month for 6 months.
After reading and speaking to others, I thought 6 months was a long time between cystos, and requested that my urologist do one sooner. He agreed and results are just in (May 31) that there are more lesions or tumors throughout my bladder with a cluster somewhat near the neck of the bladder. I am scheduled for another turbt next week.
Urologist thinks tumors are still low grade but wants to resect the cluster area to be sure. I will be starting gemcitabine, treatments if everything is as the urologists suspects, to see if I respond to that since I have not responded to BCG.
Has anyone else had this type of experience? Would appreciate any thoughts or comments.