Bladder Cancer: 19 Years Free and Counting – Katrina Williams

On November 19, 1998, I was diagnosed with bladder cancer. There was no warning. I had visited my urologist for a routine scope and dilation of my urethra. Over the years my urethra narrowed, so every few years my urologist would scope me, inflate a catheter with a balloon and re-stretch my urethra. This time when he inserted the scope, he said, “‘Oh oh, this isn’t good.”

I was devastated. A year previously, I had lost my brother to testicular cancer, and he had not been diagnosed properly until it was too late. At first the doctor diagnosed him with a bacterial infection in his testicle. After two months, they found the tumour when the doctor finally ordered an ultrasound, and, within 24 hours, his testicle was removed. He was then sent to the cancer clinic, where he saw a specialist and had a scan done. The cancer was in his liver and lymph nodes. He underwent three rounds of chemo – they were going to do a bone marrow transplant but decided at the time the quality of his life was more important, as he was not healthy enough to withstand the procedure. We tried natural treatment but nothing helped and the cancer soon spread to his brain and lungs.

Exactly nine months after his diagnosis, my brother committed suicide. It was a shock and very hard to lose him, but for the few minutes he had control, he used them as he saw fit.

After my diagnosis, I went into shock. I saw the cancer growths blocking the mouth of my urethra on the camera. To me, they looked like sea anemones – it was quite fascinating. The urologist announced it was bladder cancer and said he would schedule surgery ASAP to remove the cancer. On December 1, I had the cancer removed and a biopsy of my bladder was done. The cancer had spread through the wall of my bladder. CT and bone scans were ordered and I was given the option of having a standard urostomy or going to see a doctor in Vancouver who specializes in continent urostomy – an Indiana Pouch.

The staff at the Vancouver Cancer Centre were wonderful. An appointment was made with a doctor for January 7, and when I saw him, he was so kind and reassuring. I had a feeling the cancer was only in my bladder and, luckily, I was correct. My surgery – the Indiana Pouch – took place on Feb 17, 1999, and according to my husband, it was about eight to ten hours long. My husband and best friend sat with me from 10 am to 9 pm every day, tending to my needs.

After ten days, I was able to go home with my new system. I did not have the conventional bag on my abdomen: I passed my urine through a catheter which was inserted into my abdomen on my right side. The Indiana Pouch is a procedure which incorporates part of the intestine to form an internal “pouch” which is connected to the ureters, and the urine enters from the kidneys. I covered my stomach with a stay free pad, which I cut in half, to absorb any leakage. After a month or so at home, under the watchful eye of my friend and husband, I healed. I did, however, experience swelling in my left leg and was admitted to the hospital, but was released after a few days with no diagnosis. The swelling slowly subsided by itself.

When I saw my doctor again in October, he found one of my ureters was blocked. This meant one of my kidneys was unable to pass urine into my bladder and my kidney was deteriorating. After three trips to Vancouver to insert a nephrostomy tube into my back to drain the urine from my left kidney, with each attempt failing, it was decided I would have to go back into the hospital. The doctor would reattach the ureter to my kidney, so it would drain properly.

On March 3, 2000, I had surgery again and was in the hospital for 12 days. The surgery was a success and my kidney slowly regained full function. In the passing years, I have had the usual fears of the cancer returning to another part of my body, but I am now an 19-year survivor and living a normal life. I love my life and treasure each day.

Later, I volunteered with the Canadian Cancer Society by visiting post-surgery patients who had either bladder or bowel cancer and have undergone a urostomy. About six years ago, a lady stopped me in a mall and re-introduced herself: she was one of the patients I had visited. The woman thanked me profoundly for the hope I had given her. She was now living a full and productive life. I was so pleased to know I had made a difference to her.

I also formed an ostomy support group in the town I lived in. It is so important to have support, to have someone who can relate to you and what you have gone through. Small pieces of information can be a lifesaver for someone who is struggling with a problem in their recovery. I have since moved from there, but I hear through the grapevine that the group is still helping others.

I consider myself very lucky since I did not require chemotherapy or radiation, only surgery. Two major surgeries in a year are taxing, but I am still here to tell my story. Good luck and lots of love and hugs to all the survivors. We are all so brave and can help others with our stories of hope!