What side effects did you have BCG bladder cancer treatment?

I had completed the initial six BCG instillations but, unfortunately, have had very unpleasant side effects as a result - some lasting.

After the third treatment, I experienced the start of reactive arthritis which was especially painful in my right hip. Although the severe pain subsided after three or four months, following the final 6 treatments, I began having incontinence which has been steadily increasing since March 19th of this year. At times it has been so bad that before I can get to the bathroom, my super thick pad has been drenched and then so will my shorts which I wear in the apartment. Needless to say, this situation is a most unpleasant one. When I informed my urologist, he says "it will get better". No, it has not gotten better - only worse.

To increase my dismay, when I last had my cystoscopy it indicated not only the inflammation as a result of the BCG treatments but the emergence of two flat tumors. As I had the initial TURBT last summer, I will now again have another surgery in the near future to have these removed. I would hate to think that my doctor will begin the next three BCG treatments following this surgery. I am thinking "What is the point of that?" since this intravesical therapy did not yield the desired result of being clear after being scoped.

One needs a special kind of patience and endurance when given the bladder cancer diagnosis. Not only is it a long and precarious journey to do battle with these tenacious tumors, it is fraught with disappointment.

Wishing fellow members success toward a clear path and may it be sooner than later.

@deidre77 sorry to hear of your challenges. Have you considered getting a second opinion from top cancer center?

@dks2500
Thank you for your response. Yes, I am most definitely intending to seek a second opinion from a cancer center.

I am wondering if there are any amongst us who have developed such continual and worsening incontinence following BCG treatments and if so, what have they done? My urologist said there is medication but it seems most of what I take causes some adverse reaction so I am hesitant.

@deidre77 your experience with incontinence differs from mine. I experienced it for some time after my TURBTs, but not after my BCG treatments.

@chrisbass99, are you undergoing BCG treatment for bladder cancer? How are you doing?

I had a Foley inserted over a month ago, then removed for cystoscopy and low grade 2 cm tumor removal, then reinserted for drainage. Still having painful, urgent urination. Only symptom before catheter was blood in urine. How unusual is this?

@dks2500, did you have any issues with blood pressure before treatment? What does your oncologist say about the low blood pressure?

@colleenyoung no previous problems. The oncologist suggests I speak with my cardiologist. Cardio tells me they are not concerned with the readings. I’m trying to determine if the low BP is related to my BCG treatments. Oncologist has not confirmed that it is.

I am interested to know if there are any members who are experiencing uncontrolled incontinence following BCG treatments and if so, how is this extremely distressing issue being dealt with. I concluded the first set of six instillations on March 19th and somehow my incontinence is worsening with time.

I will be meeting a new surgeon next week to have two flat tumors removed. Unfortunately, I am a BCG failure which is no surprise since this is so common. I am entering my second year of bladder cancer, intend on seeing a new doctor and will seek an alternate treatment other than BCG.

I give all those who are on this "merry-go-round" a tremendous amount of credit for their inner strength, resilience and determination to beat this tenacious form of cancer. I have been on this emotional treadmill for only one year and feel defeated and depressed.

It is a very emotional journey. Please don't get discouraged. It IS overwhelming, for sure.
After my husband's bcg treatments for
NIBC failed, a radical cystectomy was suggested. We went for a second opinion at a universiy hospital with a medical school. The new surgical onocologist advised against removal at this point. He explained there have been many advancements in the treatment of bladder cancer with favorable outcomes in the past several years, and suggested a round of BCG with Anktiva. My husband has one more treatment and we are trying to stay positive that this treatment works.
You are not on this roller coaster alone.