My First Year of BCG Treatments

I had TURBT surgery in April 2020, after an ultrasound in February and a cystoscope in March showed I had bladder tumors. Before I left the hospital, a chemotherapy drug was put into my bladder for an hour. I recovered well from surgery. I was diagnosed with High-Grade bladder cancer stage O, I think Ois or Tis or Cis.

I had to pace myself

I had a cystoscope every 3 months with a few biopsies with catheterizing. On my September 2021 appointment, I was told my June biopsy showed cancer cells and I started my set of 6 weekly BCG treatments at the end of Sept. I had friends drive me to all of my treatments except for one. The first three went as expected, feeling better each day. I took it easy the first 3 days and did some work until my next treatment.

The last 3 were increasingly difficult with my energy decreasing fairly rapidly and having some pain. I had barely enough energy to heat prepared foods or put together cold foods. In the afternoon, I could sometimes do small tasks such as washing a few dishes, watering my indoor plants, or sweeping the kitchen. A friend brought my mail and bought milk. The laundry was just left for later. After they were finished, the fatigue continued. Three and a half weeks after my last treatment I finally had enough energy to drive 25 miles to have my last conversation with my dying sister. I continued to improve, but my energy remained low most of the time and I had to pace myself.

The results showed there was still some cancer

Six weeks after the last treatment, I had another cystoscopy and biopsy, which was quite painful, especially the catheterizing. The results showed there was still some cancer. The plan was to have 3 maintenance treatments about every 4 months for 3 years, with a cystoscopy 6 weeks after the last treatment of each set.

In my first set of 3 treatments, the side effects were similar to the second and third of the set of 6. However, I got Covid 19 right after with symptoms like a bad head cold for 2 weeks. I had more fatigue than expected but returned to near normal for about 2 weeks before my next set of 3.

In my second set of 3, the first was as expected. In the second and third treatments, the first 3 days were as expected, days 4 and 5 had no improvement, and on days 6 and 7 I had an increased urge to urinate, increased pain when urinating, and vaginal pain. After the treatments ended this increased. Three weeks after the last treatment I had to go to the washroom 29 times in 24 hours even when I had only 4 cups of fluid a day. Six weeks after the treatments ended I went 21 times in 24 hours. I was scared I would not be able to hold my next BCG till I got home from the hospital much less for 2 hours and knew I had to drink more because of the medication I was taking.

Giving my bladder a chance to recover

I don't remember when it started, but one side effect was vaginal pain. At first, it was not bad but the more treatments I had, the worse it got and lasted more days. After my second set of 3, the pain was quite severe and constant. After trying several things to relieve the pain with little success, I found that zinc ointment applied 3 times a day worked.

My next cystoscopy showed no sign of cancer, but the bladder was red, sore, and swollen. The decision was made to cancel the next set of BCG and give my bladder a chance to recover. I was also prescribed Myrbetriq to reduce urination. I will have another cystoscopy in 3 months and hopefully resume BCG.

This is my story.