Receiving a breast cancer diagnosis can be a life-altering blow for many women. Following the often-unexpected diagnosis, these women face a marathon of tests and treatments, which can be both mentally and physically exhausting. For the many women who go on to beat the disease, they now face a new journey—rebuilding their lives following cancer.
Every year, more than 23,000 women are diagnosed with breast cancer in Canada. Newmarket’s Stronach Regional Cancer Centre at Southlake treats almost 500 of these patients, and medical oncologist Dr. Farrah Kassam and nurse practitioner Brenda Wilks witness first-hand how challenging cancer treatment can be. Yet, for every struggle, they also see incredible feats of strength and empowerment; strong women who bravely commit to overcoming this disease and to getting their lives back post-treatment.
“I’d often have patients coming back to my office after their treatment asking ‘What now?’, unsure of how to pick up the pieces and move on,” Dr. Kassam says. “Our relationship with patients shouldn’t end the day they walk out the door after their final treatment. We have a responsibility to ensure these patients understand their role in the path to survivorship and to provide them with the tools and support they need along the way.”
According to the National Cancer Institute, the term “survivorship” applies to an individual from the time of diagnosis, through the balance of his or her life. The patient’s family members, friends and caregivers are also included in this definition, as they too are impacted by the survivorship experience.
In 2011, Dr. Kassam and Ms Wilks introduced the Cancer Transitions program, a six-week educational program developed by the Livestrong Foundation and the Cancer Support Community designed to help cancer survivors make the transition from active treatment back to their regular lives. The program offers educational sessions on nutrition, spiritual well-being, exercise and life beyond cancer.
“Patients have told us the Cancer Transitions program helped them build back the dismantled pieces of their lives,” Ms Wilks says. “It empowered them to take control and gave them the tools and support they needed to successfully rebuild their lives. The success of that program showed us that the more support we could offer patients, the better.”
Dr. Kassam says significant advances in breast cancer diagnosis and treatment means the population of breast cancer survivors is growing. “These patients deserve high quality follow-up to detect recurrences (i.e. surveillance) and to manage survivorship issues,” she says. With this in mind and following the resounding success of the survivorship program, Dr. Kassam and Ms Wilks, in collaboration with Cancer Care Ontario, set out to create a formal Breast Cancer Surveillance Program.
Launched at the Stronach Regional Cancer Centre in July 2013, the program is for patients who have completed active treatment, such as surgery, radiation and/or chemotherapy. The patient’s follow-up care is shared and coordinated between their primary care physician, medical oncologist and surgeon. The program encourages early involvement of a patient’s primary care physician and works by providing patients and their primary care physicians with the tools and support they need to actively participate in breast cancer surveillance and survivorship.
Designed to follow the patient throughout their survivorship journey, the program relies on the use of a paper “passport”, which includes the patient’s diagnosis details, treatment summary and a detailed schedule of follow-up appointments and tests relevant to their care. The patient carries this passport with them to all appointments, ensuring they have a single point of reference to track and schedule appointments and relay information to other members of the health care team.
Prior to the introduction of this program, patients left active treatment with multiple follow-up dates, times and locations with different doctors. With no formal way of tracking and coordinating which doctor they were supposed to see and when, patients often had duplication of follow-up visits and family doctors were typically left out of early follow-up care. “I believe patients do better in a controlled environment; they are better able to cope when they know what’s coming and what is expected of them, and the passport offers this,” Dr. Kassam says. “The passport and surveillance program allow us to empower patients with the knowledge and understanding about their care, while at the same time providing primary care physicians with the tools and information they need to be contributing players in their follow-up care plan.”
In addition to the paper passport, Dr. Kassam and Ms Wilks have created a “breast cancer survivorship” link on the hospital’s website to allow patients and other health care professionals to easily access information and tools that may be beneficial to their recovery. A mobile application of the passport, set to be introduced soon, will provide patients with greater flexibility in terms of scheduling and recording their appointments and offer an automated reminder system for upcoming appointments.
Dr. Kassam and Ms Wilks profiled the Breast Cancer Surveillance Program to primary care physicians in early fall. They also hope to be able to expand the program to include other hospitals in the region and colorectal cancer patients.
So, what began as a survivorship course at the Stronach Regional Cancer Centre two years ago has now flourished into a comprehensive patient-centred approach to “survivorship” care, designed to ensure patients have the medical, spiritual and emotional support they need to live healthier lives following cancer treatment.
“We believe we’re onto something powerful here,” Dr. Kassam says. “We think this has the potential to positively change the delivery of follow-up care for all cancer patients.”
Additional information regarding the Breast Cancer Surveillance Program can be found on the hospital’s website at southlakeregional.org/cancer or by calling 905-895-4521, ext. 6627. For general information about breast cancer, visit the Canadian Breast Cancer Foundation’s Ontario chapter website at cbcf.org.