New to Forum - Recently Diagnosed - Treatment Question

3 months 6 days ago #60707 by johned1212
I had a CTSCAN in February that uncovered a 3mm tumor in my bladder.  A TURBT procedure was conducted on 2/17/21 to take it out (and 3 other smaller tumors they discovered when they were in there).  Initial indications were that it was T1, non-invasive, High grade.   Some of the pathology report was inconclusive so they did another procedure on 3/16/21 - a biopsy to verify that it had not penetrated muscle or the lamina proria.  Thankfully, it had not and no other cancer cells were found.  They recommended 6 BCG treatments which I began on 4/20/21.   I had my 2nd treatment yesterday.   So far I have had minimal side effects. 
My question has to do with treatments after the 6 initial BCG  treatments. In almost everything I have read online, everyone does extensive maintenance BCG treatments which seem to go on for quite a few months, sometime years.   My doctor has mentioned this but is recommending we stop after the initial 6 treatments and just monitor with cystoscopies.   His logic is that if the tumors come back, he can still use further BCG treatments as a next step, whereas if we do all the maintenance BCG treatments and the tumors come back, then the only recourse would probably be to remove the bladder.  

Has anyone just done the 6 BCG treatments and stopped?  Did the tumors come back?   What was your experience after that?  Any recommendations or sharing would truly be appreciated.  Also - my doctor is great, Harvard educated, associated with one of the best hospitals in Boston and I definitely have confidence in him. And we still have to have further discussions on the treatment options.   I'm just reaching out to see what types of experiences others have had with this type of treatment plan.   Thank you, John

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3 months 5 days ago - 3 months 3 days ago #60708 by Alan
Welcome John,

All I can talk about is my personal experience. There are MANY protocols as far as inductions and maintenance. You will know more after your 6 installations. One observation is something more than the 6 initial treatment appear to be better in preventing recurrences and progression.. Very few are able to tolerate the continued regimen that extends out to 2,3 or 5 years. So do not despair in that department.

In my own case, I was given 6 weekly followed by the check cystoscopy and rest for 6 weeks then 6 more. My MD who studied under Dr. Lamm 40 years ago in San Antonio had me that protocol. It simply might be because my tumor was caught early and was small or, every induction does carry a small risk of infection etc. However, he also figured if it didn't work at that point I would have lost my bladder anyway. The good thing is you have started the process of beating this. The most important part is keeping your 3 month checks and as you graduate to 6 and 12. I am fortunate as I am almost 13 past and many are here are 10+ years free.

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.
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3 months 5 days ago #60709 by johned1212
Alan, Thank you for your response.   I appreciate you sharing your experience,   It is very helpful as I start this journey.   I am sure I will have more conversations with my doctor on next steps once I have completed my first 6 treatments.  I just wanted to gather as much information as I could so that I could go into those conversations with a better understanding of the choices and the consequences.  My gut feel, after doing a lot of reading, is maybe I should continue with some follow-up maintenance treatments, but I will keep researching and soliciting opinions.  

 It's encouraging to see others who have undergone these treatments and are still doing good.  I am glad you have successfully battled this and continue to be a resource for people like me.   Thank you!  John

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3 months 3 days ago #60713 by October28
Welcome, John. 

This gets better with time. And this forum is a great support. 

My experience was as Alan described: 6 initial BCG, then time off, then 6 more.  12 total. 
My MD, also Harvard educated and highly regarded, determined to do what yours recommends for you, partly in response to my intolerance after the 12th (6 plus 6).  We now monitor closely with cysto and biopsies. 

I am now 18 months from diagnosis/TURB, clear cystos and biopsies at exact intervals and feeling good.  As Alan mentioned, BCG also has side effects and each person differs on tolerance.  But your MD seems to think less is more for you -- good.  If the BCG procedure is difficult (I found it so but some do not), ask for Ativan or Valium to calm you an hour before procedure.  Pyridium (which you may have taken post TURB) is also good post BCG if you experience irritation.  

Stay postiive and know that you are not alone in this Forum. It does get better. 


Michael H.
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3 months 1 day ago #60721 by joea73
Though different urologists may have developed their own regimens for the treatment of non-muscle-invasive bladder cancer (NMIBC), I think the protocol which your urologist uses is not the current protocol many urologists use for high-risk non-muscle-invasive bladder cancer (NMIBC).  Note that any HG is considered as high risk except for a single tumor with TaHG which is less than 3 cm.   In your case, there are 3 tumors and T1, so it is classified as high-risk NMIBC. 

Around 2015, FDA and prominent urologists/researchers who focus on bladder cancer came to a consensus on the definition of adequate BCG treatment.   They came up with a new classification - BCG non-responsive when there is a recurrence of high-risk NMIBC after adequate BCG treatment was given.  The adequate BCG treatment is defined as the induction course of at least 5 BCG treatments plus the minimum of a maintenance course with at least two BCG treatments.   One of the reasons for defining the adequate BCG treatment to include the induction and at least one course of the maintenance is because the maintenance has shown improved the complete response rate for high-risk NMIBC which improved from about 50% complete response rate after the  6 weeks induction course only till above 80% after the completion of the first 3 weeks maintenance treatment.  Also, the induction + maintenance clearly show better results for T1HG.   (Dr. Ashish Kamat of MD Andersons )

Dr. Kamat explains the advantage of 3 weeks maintenance every 3-6 months protocol over other protocols in his presentation.

    Watch from 10:00

Another advantage in following the widely accepted protocol is most current and future studies of NMIBC will use the BCG non-responsive as the base for researches and drug development.  A case in point is FDA approval of Pembrolizumab (Keytruda by MERCK) immunotherapy use for those who do not respond to BCG treatment.  The clinical trial in which the FDA approved the use of Keytruda only included those NMBIC patients who had recurrence after the initial induction (5-6 weekly treatments)  and at least the first maintenance course  (2-3 weekly treatments).   Insurance companies usually have to cover for FDA-approved treatment but not if the patient does not meet the inclusion criteria of the clinical trial, for only BCG non-responsive NMBIC patients - those who had adequate BCG treatment ( induction course and at least the first maintenance course).    The concern I have is that if the protocol which your urologist uses such that 6 weeks induction course and puts you on surveillance by cystoscopy, then follow with another BCG only if a recurrence happens may prevent you from receiving the Keytruda immunotherapy treatment.   This is something you may want to discuss with your urologist.

Another example of the new drug for high-risk NMBIC is Vicineum by Sesen Bio.  Recently FDA accepted for filing the Company’s Biologics License Application (BLA) for Vicineum for the treatment of high-risk, BCG-unresponsive non-muscle invasive bladder cancer (NMIBC), and granted the application Priority Review

Recently, the result of a study on high-risk NMIBC in the US VA health care system was published.   Though the study was to find out the cost of the treatment.  It showed those who received adequate BCG treatment ( at least 5 weeks induction course + at least 2 weeks maintenance course) had better results than those who had induction-only BCG treatment.  

" A total of 392 patients (95%) received adequate induction BCG therapy, and 152 (37%) received adequate BCG therapy. For all patients with high-risk NMIBC, the 10-year progression-free survival rate and disease-specific death rate were 78% and 92%, respectively"

As noted in the above examples.  having the induction + the maintenance (adequate treatment) not only has shown higher efficacy over the induction only treatment but also pharmaceutical industries and bladder cancer research communities are already basing their drug development and researches on the criteria that the patients have the adequate BCG treatment, which is the induction + the maintenance.

You may not have a recurrence after the 6-week induction course, so what have I described above may become irrelevant, which I hope will be your case.  

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