BCG For Bladder Cancer: Anyone got experience to share?

Hi, @parus - sounds like you have some challenging decisions to make about whether you will be undergoing Bacillus Calmette-Guerin (BCG) for your bladder cancer.

In the section on "Immunotherapy" on this Mayo Clinic page, it explains a bit more about BCG https://www.mayoclinic.org/diseases-conditions/bladder-cancer/diagnosis-treatment/drc-20356109.

I'd like to bring @lclancy @tattrigoo @mayobruce @predictable and @hopeful33250 for their thoughts for you as you consider this treatment and also to provide some support.

I'm guessing this is what your doctor recommended, @parus? By when do you need to decide if you'd like to proceed with the BCG?

@parus, don't be disturbed about the prospect of having body parts removed. The BCG therapy doesn't go there. It involves putting a solution into the bladder, allowing it to remain for a period of time (minutes), then excreting it into a urinal or urine bag or pan. The solution includes modified bacteria that can kill superficial tumor cells on the lining of the bladder. It's been nearly 10 years since I was diagnosed with tumors in my bladder. They were removed in a TURP operation (TransUrethral Resection of Prostate tissue -- one in a hospital surgical suite, the other in a walk-in surgical center. About two weeks later I began the six-time BCG therapy. No pain or disability from any of the treatments. Just yesterday I had my annual cystoscope examination of my bladder lining; all is well, and I won't have another look for another year. We give a strong measure of the credit to the BCG treatments which seem to have prevented the outgrowth of new tumors. Martin

Hi Martin, @predictable, thanks for sharing your good results of the BCG treatment with @parus.

@parus, Other than reading about the BCG treatment do you have other concerns about the effectiveness of this treatment?
(I understand about you wanting to keep your body parts.)

When my Bladder Cancer was discovered in early 2018, I received the BCG treatment as others have described. Sometime after the 6 treatments, it was discovered that the BCG did NOT work as my Cancer had progressed. I was referred to a Surgeon who prescribed a second BCG regime. It did not work either! It seems that BCG does not work for a subset of the population. If I remember correctly, the Mayo website directly advises against a second BCG treatment if the first does not work. In any event, in late Sept. '18, I underwent a radical cystectomy where my bladder, prostate and neighboring lymph nodes were removed. I am now on a short regime of chemo/radiation inasmuch as my latest PET scan showed two, miniscule "hot spots" on lymph glands behind my stomach. Above all, be pro-active in dealing with any disease, and assertive with your doctor(s). Find out what the latest, greatest protocols are advised by leading authorities such as the Mayo.

I also received two cycles of BCG treatments that proved to be ineffective. Thankfully, I had the same treatment as described by Spooz2. That was seven years ago. I wouldn’t be writing this response today if I hadn’t opted for surgery. Parus, please remember that BCG doesn’t work for all.

mayobruce.....Are you now on a PET scan monitoring schedule?

A clarification is in order on BCG after hearing from @mayobruce and @spooz2. It was my understanding from the beginning after my bladder cancer was detected that BCG is a treatment aimed at killing cancer seeds that crop up on the lining of the bladder. It is not expected to delve deeper into the tissue and attack cancers that have begun their journey toward or into bladder muscle tissue, as I understand it. Recommendations against second or more BCG treatments are, in fact, a strong endorsement of its effectiveness in treating superficial tumors on the bladder lining. As good as it is for this, if it didn't fix the malignancies with a six-time series of treatments, the infection is almost certainly deeper and in need of a more strenuous therapy, so don't waste time trying it again. My positive BCG experience was conclusive evidence that my tumors were in their initial superficial stage, and my annual cystoscope examination earlier this week was clear years after my superficial cancers were discovered. Pleased as I am about my good fortune, I am sad to hear that BCG failed to fix your bladder and hope that, knowing that, your medical team will follow your instructions to take the next reasonable step to eliminate any malignancies that remain.

I had quarterly CT scans, with blood work, for five years at Mayo Rochester. Then two years of semi-annual tests. Now, I’m on annual follow-up. I’m thankful that I went to Mayo for a second opinion seven years ago.

I agree with your analysis of BCG treatments. Thanks for the clarification!

Reading input from others has been helpful. Final BCG instillation tomorrow morning. I appreciate what others have shared. Pretty much self involved and focusing on keeping things in order for now as I wait to see what the doctor says.