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Dorothy Barrett’s experience with bladder cancer began in the usual way. “I noticed some blood in my urine,” says Barrett, a retired teacher who lives in Bedford, NS. “At first, I thought it was only an infection. When it persisted for more than a few days, I went to see my doctor.”

Fortunately for Barrett, things moved quickly after that, and a referral to Dr. Ricardo Rendon resulted in a timely diagnosis of bladder cancer.

“Some cancers run their own course no matter what we do,” says Dr. Rendon, an urologic oncologist and professor in the department of urology at Dalhousie University. “That’s not the case with bladder cancer. Early detection is critical. It can keep symptoms at bay and also prevent death.”

Bladder cancer is a malignancy that starts in the bladder, a balloon-shaped organ that stores and empties urine. Some bladder cancers begin and remain in the lining of the bladder. These are called superficial bladder cancers, and can be treated surgically by inserting a tool into the bladder to remove the tumour—a procedure called Transurethral resection (TUR). To prevent the cancer from returning, additional treatment may include a drug called Bacillus Calmette-Guérin (BCG) or mitomycin C (MMC), or epirubicin given inside the bladder through a catheter.

TUR alone isn’t adequate for those who develop invasive bladder cancer. For these individuals, the tumour begins in the bladder lining, but spreads to the bladder wall, and frequently from there to other parts of the body. Treatment ranges from removing part of the bladder (a partial cystectomy) to removing the entire bladder (a radical cystectomy), as well as removing lymph nodes and nearby organs such as the prostate and seminal vesicles for men, and the uterus and ovaries for women. A radical cystectomy is frequently combined with chemotherapy, either before or after surgery, to improve survival.

“Identifying the stage and grade of bladder cancer is important in order to arrive at the best possible treatment plan,” says Barrett. “Mine had moved beyond the bladder’s muscle wall, so removing the bladder was the only option.”

Following a radical cystectomy, doctors choose between constructing a bladder substitute using a patient’s own intestines or performing a urostomy: an operation to create an opening (stoma) in the wall of the abdomen through which urine passes into an external bag. “We make that decision based on the nature of the tumour and the characteristics of the patient,” explains Dr. Rendon.

Dorothy Barrett was a good candidate for a bladder substitute, so in September 2008, Dr. Rendon performed a radical cystectomy and replaced her bladder with a neobladder made, in part, from tissue removed from her bowel.

“Amazingly, it works,” says Barrett with a wry laugh. “In all its glory.”

That could have been the end of this particular chapter in Dorothy Barrett’s life, but two things happened about five years after her surgery. First, she saw some advertisements that were part of Bladder Cancer Canada’s See Red? See Your Doctor campaign; next, she agreed that Dr. Rendon could send her name to Bladder Cancer Canada as a volunteer for the Atlantic Region.

Barrett had benefitted from the Canadian Cancer Society’s peer support network, so she knew the importance of providing support for patients and caregivers. “It helps so much to talk to someone who knows what you’re going through,” she says.

She also saw a need for more information about bladder cancer and a dedicated organization to champion the cause, so last summer she accepted an invitation to join the Bladder Cancer Canada board of directors to help develop awareness and patient support in the Maritimes.

“It’s alarming to think that despite being the fifth most common cancer, bladder cancer ranks 19th in terms of cancer research funding across Canada,” says Tammy Udall, executive director of Bladder Cancer Canada, a national charity. “In terms of awareness, we’re where prostate and colon cancers were about 10 years ago. Most people don’t know much about bladder cancer, and they don’t recognize the symptoms.”

The problem, according to Dr. Rendon, is twofold. First, other health conditions can have similar symptoms—especially for women; and second, many people are reluctant to disclose information about irregularities with their urine—even to their physicians.”

Tammy Udall agrees that people don’t talk much about their bladders. “It’s surprising what happens when you do start talking about bladder cancer,” she says. “The next thing you know, you discover people who have either had the disease or know someone who has had it.”

As director of Bladder Cancer Canada for the Maritimes region, Dorothy Barrett is doing her part to spread the word. Last fall she volunteered at Halifax’s inaugural Bladder Cancer Canada Awareness Walk, a cross-Canada event that, this year, attracted more than 1,500 walkers in 20 cities and raised $450,000.

“It’s really exciting to see how this walk has grown in the past five years,” says Tammy Udall. “Every walk since then has attracted more walkers, added more cities, and raised more money.”

Barrett is pleased with the Halifax turnout for the walk, and the involvement of students at Dalhousie University. She’s also working with some Dalhousie students to put together a team for the next Blue Nose Marathon. There’s a good feeling in knowing that funds raised through the annual walk and other events are put to good use by Bladder Cancer Canada in advancing research on the diagnosis, treatment, and cure of the disease.

“Surgical procedures have become more sophisticated and effective in getting rid of the cancer without removing the entire bladder,” says Tammy Udall, “but there have been no major treatment advances in the past 30 years.

Bladder Cancer Canada’s medical advisory board, which includes Dr. Ricardo Rendon, is determined to see this change, and with funding from BCC, has just launched a database for bladder cancer treatment in Canada.

“This is very good news,” says Barrett. “Until now, there was no formal way for physicians to compare their patients. The Canadian Bladder Cancer Information System (CBCIS), has the potential to be an indispensable tool for doctors and researchers.”

With the 2014 shortage of Bacillus Calmette-Guérin (BCG), a drug described by Dr. Rendon as the “gold standard” for bladder cancer treatment in Canada, the push is on to develop new ways to treat the disease. Researchers at Queen Mary University in the UK are looking at an antibody believed to make cancer more vulnerable to attacks by the body’s immune system. Closer to home, a chemist at Acadia University is working with a company in Toronto to develop light-sensitive molecules that target and kill cancer cells.

In the meantime, volunteers like Dorothy Barrett are working to spread the word and get people involved. “We may be miles away from medical breakthroughs,” says Barrett, “but we have to start somewhere.”

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