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Empowering cancer survivors

Empowering cancer survivors

[Marian Luctkar-Flude]
Photo by Bernard Clark

Marian Luctkar-Flude

Following the completion of their cancer treatment (which could include surgery, chemotherapy or radiation therapy), people living with cancer move into a new phase, of survivorship care. Often, neither they nor their primary care practitioners are familiar with all the aspects of this type of care.

Four components of survivorship care

  • Prevention of recurrent and new cancers and late effects of cancer treatment (e.g., exercise, nutrition, smoking cessation)

  • Surveillance for recurrent and new cancers and late effects of cancer treatment (e.g., mammogram, medical history, physical examinations)

  • Interventions for long-term effects of cancer and its treatment (e.g., management of pain, lymphedema, fatigue, distress)

  • Coordination of care between primary care providers and specialists (e.g., use of survivorship care plans and referrals)

Marian Luctkar-Flude’s research is changing that. A lecturer and instructor in the Queen’s School of Nursing since 2001, Dr. Luctkar-Flude’s doctoral research looked specifically at breast cancer survivors and the after-care they received from their primary care practitioners.

“When I started my PhD, there wasn’t a single comprehensive guideline that addressed all of these issues. My work synthesized recommendations from 30 published guidelines into one document.” Since the publication of Dr. Luctkar-Flude’s recommendations for breast cancer survivorship care in the primary care setting, the American Society of Clinical Oncology published a comprehensive guideline for breast cancer survivorship care that addresses the four domains of survivorship care and the many issues relevant to primary care.

On the long-term effects of cancer

“Even after cancer treatment has finished, patients can experience fatigue, distress, depression, pain and memory loss. Both cancer survivors and their primary care practitioners should be aware of these effects and discuss options for addressing all treatments. It gives you a cognitive and emotional sense of fatigue, and affects your whole being, your whole life. It’s not proportional to activity level – you can be sitting down all day and be totally exhausted. And it can persist for years. When people are diagnosed with cancer, they often don’t expect that after they complete treatment they won’t necessarily return to normal functioning. Often, family members and employers don’t expect the level of fatigue experienced by the patient, either.”

How can cancer survivors effect their own survivorship care?

“It’s important that survivors are aware of the specific treatments that they’ve had and the potential complications that can occur years down the road so that they know what to look for and what to report to their primary care practitioner (PCP). “They should be aware that fatigue, anxiety and sexual problems are common and they should bring up these issues with their PCP so that they can get help. I’m now working with a group of women from Breast Cancer Action Kingston (BCAK) to develop a survivor version of the guidelines that can help them to manage their own care.”

Knowledge of survivorship care

As well as mapping specific survivorship issues and existing guideline recommendations to these four domains of survivorship care, Dr. Luctkar-Flude’s research also looked at the self-reported knowledge and practices of primary care physicians and nurse practitioners in the greater Kingston region. “Not surprisingly, they were most familiar with the surveillance aspects of breast cancer survivorship care and less likely to be screening for or managing issues like fatigue or sexual problems.”

Surveillance involves prescribed tests and physical examinations at regular intervals in the early years following cancer treatment. Surveillance is most critical in the first few years after treatment, because typically there is the highest rate of recurrence during that time.  Most primary care practitioners are well-versed in surveillance guidelines for their patients. Survivorship care also includes screening for and managing long-term effects of cancer like fatigue, distress, depression, pain, memory loss, etc.

What has changed for primary care providers?

“I also interviewed primary care providers and asked them about the challenges they face when implementing these guidelines. Generally, they reported that they have not had any education on survivorship care and they worry about having to keep track of survivors to ensure that their follow-up care is delivered in a timely manner. Breast cancer survivors used to be followed in the cancer centre for at least five years after diagnosis. These days, stable early-stage breast cancer patients are being discharged back to primary care follow-up within one to two years of their diagnosis.”

An important PCP-patient connection

Along with an expert panel that included an oncologist, family physicians, nurse practitioners, and breast cancer survivors, Dr. Luctkar-Flude identified 21 key guideline recommendations for post-treatment breast cancer survivorship care

“Primary care providers are the ideal providers to deliver comprehensive survivorship care because they know the patient and they know all about their comorbidities. They will just need some support to learn about what they should be doing, and some help to harness technology like their electronic medical records (EMRs) to track patients and prompt them to implement recommendations.”

How can primary care practitioners integrate survivorship care into their work?

In addition to implementing the guidelines and knowing what resources are available to their patients, primary care practitioners working in family health teams can share this information with their colleagues – nurses, dieticians and physiotherapists can all participate in screening and counselling activities related to survivorship care. At cancer screening clinics, the nurse navigator could be the first point of contact when survivors are discharged from oncology follow-up. This could help general practitioners who are not part of family health teams.

A little exercise is better than none – and a buddy system can help

While physical exercise can be very effective in managing many survivorship needs, often individuals feel self-conscious if they have to take breaks during a group exercise class, or get fatigued easily.  Groups like BCAK  organize exercise  and yoga classes for breast cancer survivors. (bcakingston.ca/programs-services/fitness-classes/ )Nationally, ActiveMatch connects women with cancer with exercise partners or small groups in their communities (as well as online) to provide peer support and guidance. (activematch.ca)

What’s next?

Dr. Luctkar-Flude has a few projects underway related to survivorship care.

“I’m collaborating with Dr. Hugh Langley, the primary care lead for the Southeast Regional Cancer Program, to follow up with the women who have been discharged “early” from follow-up in the cancer centre (i.e. within one and two years of their diagnosis) and are now being followed in primary care…I am conducting surveys and interviews to determine how satisfied they are with their survivorship care and to look at which aspects of survivorship care are being addressed and what the gaps are.

“Also, I am collaborating with a researcher from McGill University, Dr. Roland Grad, to disseminate 21 key guideline recommendations for breast cancer survivorship care to clinicians using a mobile app. And then we are going to work on a survivor version of the app with the women from BCAK.

“And finally, I am collaborating with Dr. Linda Beckett from the Kingston Institute for Psychotherapy and Neurofeedback, Dr. Dianne Groll from the Departments of Psychiatry and Psychology at Queen’s, Ms. Janet Giroux, a Nurse Practitioner in the Cancer Centre, and Dr. Jane Tyerman from Trent University to conduct a pilot feasibility trial of the effect of neurofeedback on post-cancer cognitive impairment (“chemo-brain”) and cancer fatigue. Neurofeedback, or EEG biofeedback, is a novel therapy that has demonstrated effect for a number of clinical issues, and I came across a study where it was used successfully with women with breast cancer. We are hoping to duplicate the study findings and get more funding so that we can do a larger trial.”


[cover of Alumni Review 2016 Issue 3]