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In his own words: living with bladder cancer

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Norman is 70 years old and lives in Spooner, Wisconsin, where he owns and operates a bookstore with his wife. He learned he had bladder cancer a year ago. After a visit last week to his doctor he learned his bladder is now “nice and clean.”

What was your first sign that something was wrong? What symptoms did you experience?

In October 2001, I began to pass blood clots in my urine. I also felt a slight sense of urgency to urinate, which subsequently became worse as time went on. Because my wife had been planning to have elective knee surgery after Thanksgiving, I decided to wait until December to tell her about my symptoms. Of course, she encouraged me to see my doctor right away.

What was the diagnosis experience like?

After seeing my primary doctor, I was referred to an urologist, who used a cystoscope to inspect my bladder. A cystoscope is a very small instrument with a long, flexible, and slender tube with a small light at the end, which is inserted through the urethra. At that time, the urologist said it was a tumor--probably cancer. Later, the urologist took a biopsy at the time of surgery and said it appeared to be a superficial, aggressive form of cancer.

What was your initial and then longer-term reaction to the diagnosis?

Of course, my wife and I were very concerned, but we didn’t have crying fits or anything. We relied on the doctor to advise us about the treatment options.

How is bladder cancer treated?

In February 2002, I had a surgical treatment to remove the tumor, which is called transurethral bladder tumor resection. I went in the hospital on a Monday and I was home by Tuesday afternoon. During the procedure, a cystoscope is inserted into the bladder through the urethra. A small tool is then inserted through the cystoscope to burn the tumor.

A few weeks later, a follow-up cystoscopy showed evidence of some tumor remaining, so I returned to the hospital for a second transurethral bladder tumor resection.

In addition, I received a form of biologic treatment in which Bacille Callmette-Guérin (BCG), a live, weakened form of the bacteria that causes tuberculosis, is inserted into the bladder. BCG is very effective in the treatment of superficial bladder cancer. Once a week for six weeks I went to the hospital as an outpatient and had the bacteria inserted through a catheter. I went home to lie down for two hours. I was told to then urinate into the toilet while sitting down and clean the toilet with a bleach solution to avoid spreading the live bacteria around.

After my treatments were finished, I was told to return to the doctor every four months to have a follow-up cystoscopy to check whether the cancer has returned. As of February 2003, after several “clean” check-ups, I have been told to return to the doctor every six months.

Did you have to make any lifestyle or dietary changes in response to bladder cancer?

At first, I couldn’t lift more than 10 pounds for 6 weeks after the procedure. But other than that, I have exactly the same lifestyle as I did before learning I had bladder cancer. The doctor tells me, for a 70-year-old man, I’m in great shape. I take no prescription medications and I take a daily multivitamin, which I’ve taken since I was 50—a little extra health “insurance.”

Did you seek any type of emotional support?

No, my wife and I provide each other with all the support we need.

Does bladder cancer have any impact on your family?

Not especially. Of course my wife was worried, especially since she had worked as a nurse. But she knew what to expect and has dealt with it well. We also decided not to tell our three children about the cancer until the day before surgery. I received plenty of grief from them for that! But I knew they would worry. Plus they’re all spread out on the East coast and they would’ve dropped everything to visit. But what could they do here? Nothing. I think it was the right decision.

What advice would you give to anyone living with bladder cancer?

Don’t go off the deep end—bladder cancer is treatable. There’s no sense in overreacting. If you have cancer, you have cancer. The doctor tells me it will come back. But he also told me how to treat it and it seems to have worked so far. So, have regular check-ups and do what your doctor recommends.

As told to Diane Voyatzis, RD

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.

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