May is Bladder Cancer Awareness Month, and I had intended to post daily about this disease that affects about 18 out of every 100,000 people in the United States. When the cancer is limited to the lining of the bladder, the five-year survival rate is 96%. If the tumor is still confined to the bladder but has not spread outside to other tissues or organs, the survival rate is 70%. Since my husband was diagnosed, we have known two people who have died from this disease. We have another friend who was diagnosed and had his bladder removed. We know that is always a possibility.
When my husband was diagnosed and the doctor here in Macon refused to try and get the BCG to treat him, I was furious. I felt the doctor here was just going to sit back and let my husband die. I asked Bob to call Dr. James Bennett, his previous urologist in Atlanta. Dr. Bennett had treated Bob for prostate cancer and had been his urologist until we moved to Macon, approximately ninety minutes away. We loved Dr. Bennett and his office, but since it had been seven years since the prostate cancer, we felt safe in transferring his care.
Dr. Bennett saw us right away. “I can get the BCG, but there is a worldwide shortage so it may take a couple of weeks. You’ll get one infusion every week. After the infusion, you’ll lie on your back for fifteen minutes, rotate to your side for fifteen minutes, your abdomen for fifteen minutes, and then your other side. We’ll do cystoscopies every three months until you’ve been clear for a year.”
Great. My husband was going to be like a rotisserie chicken. At least he’s being treated.
Four months later, the cancer was back. Another round of BCG. This would be our routine for the next eighteen months. Dr. Bennett and his office were wonderfully supportive.
After each procedure, Bob would need a catheter for three or four days. Sometimes, the catheter would plug due to blood clots, and we’d go to the emergency room. Although I had what I needed to irrigate the catheter, I was afraid.
As time went on, the tumors returned less frequently, but Bob would sometimes develop urinary tract infections. I could always tell by changes in his cognitive status. He’d go on antibiotics, and the infection would clear, but he would require close supervision for a few days.
In 2022, the infections became more frequent. Bob also has atrial fibrillation and glaucoma, but he doesn’t see any limitations, and he doesn’t notice when changes occur. In February of 2023, I noticed that his urinary stream sounded very weak, and he wasn’t thinking clearly. His urethra was obstructed, so we made an appointment with Dr. Bennett, who arranged for a cystoscopy to clear the stricture.
The stricture this time required general anesthesia. Things happened quickly in the operating room, and there was a lot of blood. Dr. Bennett used a large catheter to provide pressure and stop the bleeding. We were able to remove the catheter in a week, but we had to repeat the process two months later and then a month later. The stricture would return.
This was just unsustainable.
More on this tomorrow, but if you or someone you love are having blood in the urine, please get yourself checked.
Dr. Suzanne Minarcine 