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Prostate Cancer - Patient Focus Groups

Helping prostate cancer patients cope with a rapidly changing treatment landscape

Prostate cancer patients have been told for decades that the secret to survival lies in early diagnosis and treatment – but what happens when the latest research recommends not getting treated?

Nurse Researcher Margaret Fitch is working with Dr. Fred Saad’s TFRI-funded Canadian Prostate Cancer Biomarker Network team to study how men with prostate cancer cope within a rapidly changing research landscape. Prostate cancer is the third leading cause of cancer-related death in Canadian men.

The group has discovered that some tumours are aggressive and lethal, requiring immediate treatment. Others are considered indolent and therapy may not be needed for years. Dr. Saad’s team is also working to identify a biomarker to determine which category a tumour falls into, and to detect cancer earlier. 

When it comes to prostate cancer messaging, the public has been told to get diagnosed and be treated immediately, Fitch says. Suddenly changing this information can be jarring for patients and their families.

“You can appreciate that if you tell somebody, ‘You have cancer, but you don’t need treatment,’ that has implications for their anxiety and distress levels,” she says. “And we need to be able to anticipate that.”

To determine how men felt about the changes in prostate cancer treatment, Fitch ran a series of Canada-wide focus groups comprised of 50 participants with a low-risk prostate cancer diagnosis. Around 50 health care providers, ranging from urologists to radiation oncologists, were also interviewed.

Most patients said that if they didn’t immediately need treatment, such as surgery or chemotherapy, which bring potential accompanying side effects, it would be much better not to have it. Discovering a biomarker that could “give reliable, valid answers” as to whether a tumour was low or high-risk was also exciting for most of the men. Further, fully understanding all their treatment options was deemed “absolutely critical.”

The basic science may advance and take a step forward, Fitch says, but it has to take a step forward with people.

“I think that one of the most dramatic changes in cancer care is the recognition that patient voices, survivor voices, have a wisdom; they have something to offer to us as providers, as researchers,” she says. “Their wisdom can actually inform programs and policy…and we have to understand what that perspective is.”

Related Patient Story: 

Denis Petitclerc: http://www.tfri.ca/en/OurWork/patient-stories/denis-petitclerc

Project Title: The Terry Fox Research Institute Translational Cancer Research Project: The Canadian Prostate Cancer Biomarker Network (CPCBN) 
Investigators: Fred Saad, Anne Marie Mes-Masson, Mathieu Latour, Jean Baptiste Lattouf, Louis Mathieu Stevens, CHUM; Marie Paule Jammal, Cité de la Santé de Laval; Jean Benoît Paradis, Complexe Hospitalier de la Sagamie; Armen Aprikian, Simone Chevalier, Simon Tanguay, Mario Chevrette, Jacques Lapointe, Fadi Brimo, McGill University Health Center; Louis Lacombe, Alain Bergeron Yves Fradet, Hélène Larue, CHUQ; Jeremy Squire, Queen’s University; Neil Fleshner, Rob Bristow, Antonio Finelli, Shabbir Alibhai, PMCC; Laurence Klotz, Margaret Fitch, Sunnybrook Hospital; Darrel Drachenberg, Manitoba Prostate Center; Martin Gleave, Ladan Fazli, Alan So, Colin Collins, VPC; Simon Sutcliffe, TFRI
Duration: 2010-2019

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