Ed’s Story: Diagnosis: Non-muscle Invasive Carcinoma In Situ (CIS) Treatment:

[Nightingale]

I’m a professional drummer and have been teaching since 1998.

 

I was having problems with spasms from around 2003 to present day. Later, I found out that my two ureters were oddly shaped. They were extremely small at the top by the kidney, and unusually large at the bottom near the bladder. The problem was that the top part wouldn’t be large enough and would cause a spasm (a type of back pressure) in my kidney when I would try to urinate I still have this problem to this day. The spasm pain is less now and doesn’t happen every time.

 

I don’t know if this helped cause the bladder cancer, but I’ve talked with other people who have had irregularities and later developed bladder cancer.

Unlike most people who have had peed red, and later discovered they have bladder cancer, I had none of that. In late 2012 and early 2013 I was plagued with a bladder infection that didn’t seem to go away. I went to the doctor many times, but the medication didn’t work for long. I was starting to get some small leaking from time to time as well, so I went back to my family doctor and he gave me a few pills to take for a week. They were powerful and supposed to clean out anything bad. After a week, I was exhausted because I don’t think I was able to absorb any nutrients.

By July, I still didn’t feel like I was okay, so I went back to my doctor and demanded to see a specialist. He booked me with an urologist. In September I went for my first cystoscopy exam.  The urologist discovered a small red bump and told me he needed to do a biopsy of that bump.

In the first week of October I went in for day surgery to have the biopsy done. I was asked to come in the following Friday, which made me nervous because my urologist doesn’t usually see patients on Fridays. When I got to the doctor’s office I was the only one there, so I was really uneasy.

 

My urologist told me the bump was a type of cancer called Carcinoma In Situ. Luckily for me, he arranged for another surgery the following Monday, at which time he went in and cut out and cauterized the bump.  After that I was scheduled for 21 or 24 BCG immunotherapy treatments. Because of the very large lower part of my ureters, the BCG treatment traveled up and into my left kidney. The BCG is not supposed to do this and treatments were stopped because that kidney was being damaged by the drug.  I only finished 12 or 13 treatments in 2014/2015.

During my treatments, I went to group bladder support meetings and learned a lot about the disease and how to cope with everything . It was most helpful to learn what to expect after receiving BCG treatments, and what to do if the cancer returns. The support group leader really helped me with the latter by sharing her story of when she did have a recurrence.

 

I was lucky in that I was usually in good shape by the night after the treatment EXCEPT for one treatment – the fifth.  Unbeknownst to me, the BCG went up into my kidney that time. I took the treatment at 8 AM, and by 4 PM, my kidney was in a pulsing painful spasm. This went on for 2 hours. I was ready to go to emergency but the spasms started to subside, and I finally fell asleep.

 

After that I caught a bad flu because I was so depleted. I didn’t recover for three weeks. I had a fever followed by bed sweats and then sleep. I told the urologist’s office about the problem, and they stopped treatment for three months. If this ever happens to you, it’s not normal, and you should get a CT scan right away. I should have stopped all BCG treatments then. My scan after 12 or so treatments, showed 2 black stripes about a third and two thirds down the kidney. No damage occurred to my right kidney – I don’t know why.

I have had no recurrence of the cancer. I have been clear for just over two years. I was lucky in that it was caught early, and didn’t penetrate the muscle tissue which would have been a lot more serious. I hope I don’t get it back, because I don’t know how it could be treated without doing further damage to my kidneys. That’s why it would be good for me to have the blood injection treatment if researchers can develop it.

 

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