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Surviving prostate cancer – now what?

The death rate from prostate cancer has been cut in half in the last 25 years – great news for the many survivors. So what happens to these men after they go through treatment?

While the needs of survivors have grown as they live longer and there are more of them – services to help them recover have not always been available.

Dr. Jennifer Jones, Director, Cancer Rehabilitation and Survivorship Program at Princess Margaret Centre in Toronto, describes the evolution of services for survivors:

 “Twenty-five years ago there really wasn’t anything out there. Now, we’ve got lots of community programs but it’s really in the past five to ten years that survivorship, and more recently, a focus on cancer rehabilitation, have started to develop.”

Twenty-five years ago, in 1994, Dr. Jones had just applied for graduate school - starting her path to becoming a cancer survivorship researcher, focusing on life after diagnosis and treatment. She’s now focused on helping the cancer care system meet survivors’ recovery needs. One part of that effort is being part of the Prostate Cancer 360 research team, a three-city survivorship project awarded by Prostate Cancer Canada and proudly funded by Movember Foundation.

Watch Dr. Jennifer Jones speak about research and services for prostate cancer survivorship

She describes the research: “The first part is to build a national group of patients that have finished treatment and then follow them over time. It helps us understand the course of recovery, who’s at risk for issues.” To date, more than 1,400 men have joined this study, providing information about their side effects and quality of life over the course of their recovery and into long-term survivorship.

The second part of the study tracks the impact of survivorship care plans, which are given to patients at the end of cancer treatment. These plans are developed based on a 20-30 minute interview with a nurse specially trained for this project. They provide patients with information about their diagnosis, treatments and follow up care. They also focus on management of on-going side-effects, provide education on potential late effects and support healthy lifestyle changes, and provide links to resources.

She summarizes the importance of the plans:

“For most patients, at the end of treatment they’re told –your treatment’s over and we’ll see you in three or six months. They’re not given a lot of information about what to expect. What are my follow up appointments going to look like? Are there certain symptoms I should be monitoring or worried about? If I’m feeling anxious or fatigued, what are the resources or where should I go to get help?”

She continues: “So that’s really what this interview is about - getting people connected to resources. The value is being able to have that reflection and an opportunity to have somebody help them navigate the system.”

Her hope is that over time, survivorship care plans and programs such as the Cancer Rehabilitation program at Princess Margaret Cancer Centre become a standard part of the care that prostate cancer survivors receive. “Looking forward, I hope that when patients need support, that they have access to it, that it’s timely, that it’s funded, that if people live far away - it’s available to them online, through whatever means that they would like.”

Dr. Jones is well aware of the challenges survivors face. She also knows that change can take place and is determined to be part of it: “The research I love most is implementation research - getting the things we know work into patient care. That’s meaningful because you can see change happen quickly. You can see people’s lives improve.”

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Posted: 2019-05-28 12:48:59 PM


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