Consult expert for recurring stones

Dear Dr. Roach: I’m not able to get any straight answers from the doctors about a serious issue my husband is having. He was diagnosed in August 2019 with bladder cancer. In early September 2019, the tumor, part of the lining and end of the ureter were removed and tested, and we were told they got it all. They recommended BCG immunotherapy to prevent recurrence. He had two treatments one week apart beginning October 30, 2019, and immediately started having problems, passing stones then unable to urinate. They inserted a catheter and scheduled a cystoscopy, and restarted the therapy after a few weeks.

He completed the therapy (with difficulty) in January 2020 and again experienced stones, inability to urinate and again a catheter and cystoscope. We were told they cleaned out the bladder and he needs to drink more water. Within two weeks, we were in the same boat, even though he drinks about 80 ounces of water a day.

The doctor said he had an intense reaction to the immunotherapy and the effects can last a year. But my husband is experiencing the same things over and over.

He’s passed over 30 large stones, and more than 100 of the little ones.

Is there anything that can be done to help this situation? I need help.

C.V.

Answer: I have never heard of stones as a complication of BCG treatment, and two reviews on complications of BCG treatment had nothing to say about stones. Bladder stones are either passed or stay in the bladder, where they can grow, continuing to cause symptoms.

Infection IS a common complication of BCG treatment, and I wonder whether he might have developed an infection that predisposes toward stones. I would be surprised if his doctors hadn’t considered that, but it may still be worth another look. More importantly, an evaluation of the stone will help guide treatment for stone prevention.

All nephrologists (kidney experts) have expertise in stones, but there are a few who have special expertise in stones, and a consultation may be invaluable.

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