When Things Go Wrong With Cancer Treatments

Tuberculosis is a rare but serious side effect of BCG therapy.

When I was diagnosed with bladder cancer, my oncologist said that it was contained within the bladder wall and was in a very early stage. He did a scraping of the bladder wall followed by Bacillus Calmette-Guerin (BCG) immunotherapy in the bladder. This was great because it was not nearly as bad as standard chemotherapy. Everything went well with the surgery, and I was released to go home.

As a follow up, the oncologist suggested having more BCG immunotherapy as a preventive measure. I agreed. This was done on an outpatient basis. The only issue I had was dealing with urgency and, on occasion, incontinence. However, I was able to cope without too much discomfort.

After several weeks I noticed that I was becoming increasingly tired. My energy level was low.

Things were not good. I began to experience loss of appetite, chills, fevers and night sweats. I was really alarmed and couldn’t understand what was happening to me. I knew that some of these were typical side effects of BCG, but some were not. It was disconcerting.

I called my oncologist and he said there was nothing he could do and said I should consult my primary care physician. I was shocked by his response, a little angry and disappointed. I thought to myself, “this has to be related to my treatment. Why doesn’t he see that?”

My symptoms got frightfully severe, so I went to the emergency room. It just so happened that my primary care physician was on call that weekend. You can’t imagine how happy I was to see him walk into my room. I felt a tremendous sigh of relief! I knew I was in good hands. He gave me a total examination and took blood samples. He did several tests. He could not figure out what was wrong, so he took blood samples every two hours and had them cultivated for several days. Finally in desperation, he asked me if it was OK to send a blood sample to the CDC as he had tested everything that he could possibly think of at this point, and all the test results came back negative. I agreed and we both waited anxiously.

After some time, he got a response from the CDC stating that I had tuberculosis (TB). It appears I had become infected from the BCG treatment. This was very rare. He immediately began to treat me in the hospital and slowly I showed signs of improvement.

After a while, he released me to go home, but my recovery was difficult. Some days I could sit up for a few minutes and then I went back to bed. This lasted for months on end. I eventually struck a point when I was able to sit up for half a day, then most of the day. I couldn’t believe how fatigued I felt. It was a long hard road to recovery, but I made it.

When I was in college, I remember studying about the effects of TB on various communities in the states, and now that I had experienced it firsthand, I had a whole new perspective on things. I became a part of living history.

March 24is known as World TB Day. It’s a time when we remember Dr. Robert Koch’s discovery of mycobacterium tuberculosis. This day is set aside to educate and inform everyone around the world about TB and its cure.

I was so thankful that my primary care physician hung in there with me and got to the bottom of my problem. Sometimes things can go wrong with treatment and it takes time to figure them out. Trying to stay positive while all the testing and blood drawing was going on was a hard job, but it’s the only way I could get through this crisis. Having a supportive and compassionate primary care physician made all the difference.

He would even call me at home to see how I was doing. That is a rarity among doctors. It really touched my heart to know he cared. He had been with me for over 20 years and knew my body, mind and spirit. When things went wrong, he gave me the support I needed to make a full recovery and I am grateful every day!

This post was written and submitted by Chester Freeman. The article reflects the views of Chester Freeman and not of CURE®. This is also not supposed to be intended as medical advice.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.