Bladder Cancer Canada started with people just like you – here is how it all began.

By: Tawny Barratt

Read time: 16 minutes

Thanks so much for joining us during Bladder Cancer Awareness month! There are currently 80,000 Canadians currently living with a bladder cancer diagnosis and 12,000 more will be diagnosed this year. At Bladder Cancer Canada, we are doing everything we can to increase awareness of this devastating disease to as many Canadians as possible, including this blog and podcast that we created for Bladder Cancer Awareness month. This blog and podcast was generously sponsored by our partners Bristol Myers Squibb and Seagen Canada.

David, you are a well-known bladder cancer survivor in our community. Can you give us an update on your current health?

If you have never had the chance to speak with David, you won’t know that he has a warm and gentle voice, full of vibrant life. It is his soft chuckle that comes over the line first. “Well, thanks to modern medicine, I am alive today, and my health is as good as it gets for someone my age, who’s had a radical cystectomy. This is thanks to my medical team for their wonderful care and treatment.”

David’s voice softens and becomes more serious.

 “We don’t talk a lot about the fact that this disease can be deadly if it’s not diagnosed and treated early. We’ve lost a lot of people to this disease, and a number of them were friends of mine.” David pauses here, and you can tell that he is choosing his words carefully. “This is a hard time for so many that are not only undergoing  bladder cancer treatments, or are survivors. We are now dealing with COVID and the fear that it has created and the added difficulties associated in attending hospitals and in some cases, delays in treatment.” David, who turned 80 last year, is like many elderly Canadians; he is taking precautions to protect himself and others during the pandemic.

David, you were diagnosed over 25 years ago. Can you tell us what it was like when you were first diagnosed with bladder cancer?

David can still remember, to this day, what it was like when he heard the words that he had cancer. “It was 25 years ago, and it certainly wasn’t a good time in my life. I was scared and I had no place to turn to for help.” This was before the internet existed as we know it today. David remembers going to a library in North York to look for information. and all he found were some medical books, with black and white drawings, and medical terms that he had a hard time understanding. “The prognosis was not good. According to these books, I was facing two potential outcomes – either recurrences for the rest of my life, or a bladder removal, which would represent a significant change in lifestyle.”

For the first time in his life, David became proactive about his healthcare, researching the best bladder cancer doctors in Canada. This was when he found Dr. Michael Jewett, a urologist in Toronto. David picked up the phone and called Dr. Jewett’s office. “His secretary was impressed with my advocacy efforts,” he remembers with a smile, and she asked him to have his doctor fax his medical file over to their office. Once David started to see Dr. Jewett as a patient, he asked the doctor if it would be possible to talk to other patients about what he was going through, because he felt “scared and alone.” Due to privacy issues, the response to his request was “No”, but his request had a lasting impact on Dr. Jewett. Three years into his treatment, Dr. Jewett called David to say that he had a new patient, similar in age, and this patient was looking to connect with someone also going through bladder cancer treatment. Would David be interested in speaking with him?

“Absolutely,” was his response. 

This would become David’s first effort in helping other people diagnosed with bladder cancer.

David, there was very little support for bladder cancer patients in Canada 25 years ago. What happened to change that? How did you get involved?

Over the next few years after his initial diagnosis, David would continue to see Dr. Jewett as a patient, and a connection between the two men grew. Six years into his treatment, Dr. Jewett asked if David would be interested in doing a presentation with him at a local hospital, from a doctor-patient perspective. He, of course, said yes.

“On the evening of the event at Toronto General Hospital, Dr. Jewett shows up with an overhead projector, slide projector, VCR and flip chart. He holds our attention, explaining in detail the types, grades, how the disease may progress and the treatments available.” There is amusement in his voice as he recounts this story and it’s easy to imagine a much younger and mischievous David, sizing up the room. When it’s his turn to take the stage, he comments on how well-prepared Dr. Jewett is, saying, “I don’t have any slides or videos, but I have one thing that Dr. Jewett doesn’t have – I have bladder cancer.”

From that moment on, David had the attention of the room. Afterwards, he was surrounded by other patients – many of them further along in their cancer journey – wanting to share support. 

Over the next few years, David and Dr. Jewett would continue to do patient presentations at various locations. David also started attending different support groups to see what other organizations were doing. It was at a prostate support meeting that he realized two things: “The first was the importance of comradery and support of these group meetings and the second was that as far as I knew, I was the only patient doing advocacy work for bladder cancer in Canada and that had to change.”

Unfortunately, Dr. Jewett had other plans for him at that time. David’s bladder cancer returned – this time, it was muscle-invasive. Dr. Jewett advised that David undergo a radical cystectomy (the removal of the bladder) and his prostrate as well.

The procedure was a success, and five years later, while still maintaining their connection, Dr. Jewett called David with an invitation that would change everything.

David learned that an advocacy and support group had recently formed in the US, called BCAN (Bladder Cancer Advocacy Network). Dr. Jewett had joined their scientific medical board and through Dr. Jewett, BCAN’s cofounder, Diane Quayle, invited David to attend their patient meeting in Chicago.

David’s answer was, of course, “Absolutely.”

“This is important work. I have to do this.”

David and his wife, Marilyn, made the 12-hour drive to Chicago that fall and on a Saturday morning in October 2007, he found himself sitting in a room with about 40 other bladder cancer patients in various stages of their diagnosis. David was introduced by Diane as the only Canadian in the room and a 12-year survivor. The attendees had never met anyone that had survived as long with the disease as David had. People started coming over to him, shaking his hand and putting their arms around him. “I remember many people telling me, ”now I believe I have a chance to survive!” and that’s probably the moment when I realized what I needed to do.”

On the drive back to Canada, David told his wife, Marilyn, “This is important work. I have to do this.”

And so he did.

“What was the patient feeling and what was their experience?”

In the summer of 2008, David attended BCAN’s first “Think Tank” in Canada in Mont Tremblant, outside of Montreal. Dr. Jewett was presenting, alongside numerous other doctors, including Dr. Wassim Kassouf, who would become the first Medical Advisory Board Chair for Bladder Cancer Canada. 

“I remember being one of four patients interacting with the doctors in the room, in between presentations. This interaction over the years has grown dramatically, both in BCAN’s think tank and BCC’s Quality of Care meetings as the doctors ask, “What is the patient feeling and what is their experience?””

Following the Think Tank meeting, David and Diane had lunch, and David said the same thing to her that he had said to his wife, not that long before: “I want to do this. There needs to be bladder cancer patient support and advocacy in Canada.”

Diane said that she would help. She posted on the BCAN website that volunteers were needed to do advocacy work in Canada. Dr. Jewett also helped, approaching a few of his bladder cancer patients, looking for a volunteer. David interviewed a number of people and then, through BCAN, was introduced to Jack Moon, a fellow Canadian living outside of Toronto. The two men met for coffee and David remembers Jack telling him that he was doing advocacy work for BCAN in the US, and they agreed that it was important to be doing the same kind of work in Canada.

And so they did.

David, you mention your wife, Marilyn, earlier in the interview. Tell us about the caregiver relationship and what that looks like for people diagnosed with bladder cancer and needing support?

David’s wife, Marilyn, has been involved in his care from the time of his bladder cancer diagnosis 25 years ago, and has been involved with Bladder Cancer Canada from the beginning – she was with him at that first BCAN patient meeting in Chicago and on that drive back, many years ago.

How the organization supports patients has evolved dramatically during this time, including the support provided to caregivers. From his experience, David lists the three main reasons caregivers reach out to Bladder Cancer Canada:

• The patient does not want to be involved or doesn’t want anyone to help but the caregiver feels compelled to help them 
• The patient is elderly and they’re unable to reach out for a number of reasons including the status of their health, their age or language barriers – they need an advocate.
• The caregiver is totally involved with the patient and feels like the coach of their team; they are working together to get the best care and outcome and recognize that it’s a team effort.

For David and Marilyn, the third reason best describes their patient-caregiver relationship – they are a team and always have been. 

“I’m very fortunate. Marilyn has always been with me both during my treatments and in my advocacy work,” David says fondly, and the love that he has for his wife is evident in his words. “I remember getting a call from a gentleman who had just had a radical cystectomy and was really struggling with it. Despite the supportive relationship that we developed, I realized there was an element missing. One day, I asked him, “Do you think it might be helpful if Marilyn talked to your wife?”

He remembers the gratitude that the man responded with and David connected the two women. This is something that Marilyn would do numerous times over the years. Bladder Cancer Canada not only supports patients, but can support their caregivers as well.

“You may not realize what it’s like to be that person, walking around with the word cancer attached to you, even if it’s non-muscle invasive. They are living with the weight of a cancer diagnosis.”

David has also been in a unique position to offer patient support as a result of his own bladder cancer treatments. His bladder cancer was initially non-muscle invasive and then, when it became muscle-invasive, resulted in him having his bladder removed. He has experienced the different treatments, surgeries, recovery times and lifestyle changes. David knows first-hand that a radical cystectomy can be life-changing, but also knows that non-muscle invasive bladder cancer can be difficult to live with. 

He remembers a meeting he attended in Toronto with six doctors to discuss an upcoming patient meeting. “We were discussing the agenda. I proposed having someone from social services talk about the mental and emotional aspects of living with non-muscle invasive bladder cancer.” When a doctor in the room asked him if that was necessary, David’s response was powerful. “You may not realize what it’s like to be that person, walking around with the word cancer attached to you, even if it’s non-muscle invasive. They are living with the weight of a cancer diagnosis.”

David, as the organization continues with its mission to provide patient support, increase awareness and fund research, what is one thing that you wish everyone knew about bladder cancer? And what are your hopes for bladder cancer patients, survivors and caregivers in the years to come?

There is no hesitation with David – his wish today is the same as it has always been: if you see red in your pee, see your doctor. Don’t hesitate – if it is bladder cancer, the sooner it is diagnosed and treatment started, the better the results.

It’s a message that saves lives, as with the bladder cancer patient in Vancouver who saw a See Red See Your Doctor ad on the sky train on his way to work. 

Or the patient who saw our ad on the Weather Network and remembered what it was like to discover blood in his urine.

Or the 37 year old woman who responded to our awareness messaging with her own story – so that other people, her age, would know that it could happen to them as well.

David is proud of the work that the Bladder Cancer Canada team has done over the years to get this message out to thousands of Canadians – from Kyle, our Creative Director who started working with David when he was a high school student and then went on to do pro bono work for the organization when he started his own advertising company, to Elliott, a volunteer board member who manages all of the advertising aspects for the organization and is responsible for getting us millions of dollars in advertising across Canada for a small fraction of the cost. 

“I’m hoping for more breakthroughs in the years to come.  I don’t want my grandchildren or, if you’re reading this, your children or grandchildren to have to face this disease.”

It’s an important message that David believes will have longevity because of the nature of the disease. “There have been many advances in the area of bladder cancer that certainly weren’t available when I was diagnosed 25 years ago, or even when I had my radical cystectomy 15 years ago. Over the last five years, I have seen major advances in medical research in understanding and treating this disease. By the way, much of this research is being supervised by BCC’s Medical and Research Boards and funded in party by BCC.  I don’t want my grandchildren, your children or grandchildren to have to face this disease,” There is so much emotion in his voice that it’s easy to picture the type of grandfather that he is.

“Until then, Canadians should know that BCC will be here to provide support during your bladder cancer journey, whether you are a patient, survivor or caregiver. It is a proven fact that patients working with a support group have better outcomes. We know that because of the rate of recurrences of bladder cancer, we might be providing support services for the rest of your life. We’re committed to doing that because you deserve the best care and advocacy efforts that we can provide.”

David is also aware that the organization’s success is the result of the support provided by the Bladder Cancer Canada team, including the organization’s first Executive Director, Tammy Northam, to the numerous doctors over the years. From David’s urologist, Dr. Michael Jewett, to Dr. Wassim Kassouf who would join as the first chair of the Medical Advisory Board to the countless other doctors that would become involved, going beyond providing medical help, status and funding. Currently, there are 30 doctors from across Canada who sit on the Medical Advisory and Research Boards for Bladder Cancer Canada, including Dr. Peter Black, the current chair of both boards, and Vice Chairs Drs. Srikala Sridhar and Girish Kulkarni. 

 “Our doctors do a wonderful job of caring for us. They spend long days consulting and operating, when necessary, and that fills their professional commitment. Many doctors, including the doctors on our boards, give back much more. They attend scientific meetings, supervise research studies and attend and present at patient meetings. They give up their free time and time with their families. They are there to help us now and in the future. We owe them a great gratitude.”

For David, this is an environment that resonates strongly with him, having been raised in a modest household. His own parents taught him the importance of giving back to the community, to help those less fortunate than themselves. It would not be a surprise to many that David, years later, would co-found Bladder Cancer Canada with the input of generous, kind-hearted physicians and other members of the community and would create an organization that would help enhance the lives of the thousands of Canadians living with bladder cancer.

“Working with the volunteer board of directors for Bladder Cancer Canada, the staff and the team of doctors brings me full circle to how I grew up – to take care of others and give back to my community. Bladder Cancer Canada is one of my proudest accomplishments and I know my parents would be very proud of me for what we have accomplished.”

There are currently 80,000 Canadians living with a bladder cancer diagnosis and 12,000 more will be diagnosed this year. At Bladder Cancer Canada, we are doing everything we can to increase awareness of this devastating disease to as many Canadians as possible – including this podcast that we created for Bladder Cancer Awareness Month.

Bladder Cancer Canada’s mission is simple: To support patients, increase awareness, and fund research. Please join us in making our vision a reality – a world where bladder cancer is just a memory. If you enjoyed today’s blog/podcast, help us make a difference – please consider making a donation today. 

We commit to using all funds in a responsible and transparent way, ensuring that your donation helps people in their fight against bladder cancer.

This blog and podcast was generously sponsored by our partners Bristol Myers Squibb and Seagen Canada.

Listen to the podcast here.