Prospective Surveillance. Early intervention can improve cancer treatment side effects.

Prospective surveillance

Early intervention can improve cancer treatment side effects

By Jill Binkley

Breast cancer survivors and their families face a cascade of challenges during and after treatment. These include ongoing medical, physical and psychological issues1,2. Common physical side effects of treatment include lymphedema, upper extremity and trunk issues, pain, fatigue, chemotherapy induced peripheral neuropathy [CIPN], balance issues, weight gain, bone health issues and arthralgias (joint pain). These conditions, many of which are amenable to rehabilitative and exercise interventions, are known to lead to significant limitations in activities of daily living, leisure activities and work responsibilities3

There is mounting research that demonstrates that early intervention is important in reducing and managing treatment side effects4-8. For example, early detection and treatment of lymphedema has been shown to be effective in managing and reducing progression of the condition5. The Prospective Surveillance Model of Rehabilitation (PSM) was developed to promote early detection and management for the multitude of physical side effects of breast cancer treatment8. The model includes pre-operative, early postoperative and ongoing periodic physical therapy evaluation for side effects of treatment in breast cancer patients. The suggested timepoints of evaluation are within the first month after surgery and then at periodic timepoints in the first year following

Pre-Operative Rehabilitation Assessment (ROM, Strength, Baseline UE Volume, Function, Exercise Level, etc.)

Early Post-Operative Rehabilitation Assessment (Repeat Pre-Operative Measures)

Ongoing Surveillance (Timeframe dependent upon risk factors for impairment and functional issues)

Referral to and Initiation of Rehabilitation and Exercise Consultation and Programs as Needed

diagnosis. Exercise and evidence-based patient education are woven throughout the model8

The need for the PSM Rehabilitation and exercise have been shown to reduce or prevent issues related to breast cancer treatment8. Unfortunately, most women in the United States and Canada do not receive this care and referral to physical therapy is not routine. Multiple barriers to this care were identified over 10 years ago and are still relevant today9. One barrier can be

Jill Binkley, PT, MSc, CLT, FAAOMPT is a Physical Therapist and Founder of TurningPoint Breast Cancer Rehabilitation. Jill is a Certified Lymphedema Therapist and a Fellow of the American Academy of Orthopaedic Manual Physical Therapy. She is a passionate advocate for increased attention to the unmet side effects of breast cancer treatment and the role of rehabilitation and exercise in improving the quality of life of breast cancer survivors.

fragmented delivery of cancer care; surgery, reconstruction, radiation and chemotherapy often include multiple physicians and locations and even different healthcare systems. Another barrier is the lack of established relationships between the oncology, general surgery, plastic surgery and rehabilitation professions. Patients and their healthcare providers may have the sense that these side effects are ‘expected’, not amenable to treatment and that they simply need to be tolerated10. Patients may feel uncomfortable advocating for care when their healthcare providers are saving their lives. The role of physical therapy for patients after orthopaedic shoulder surgery is common knowledge, but there is a general lack of understanding about the important role of rehabilitation and exercise for breast cancer patients.

Adapted from Stout N, Binkley J, Schmitz K et al, Cancer, 2012

The PSM provides a pathway to physical therapy care and follow-up to address the many side effects of treatment known to be amenable to rehabilitation and exercise. When integrated into a patient’s medical and surgical care plan, the PSM can reduce the impact of issues such as lymphedema, decreased range of motion and function and fatigue through early treatment and education. There is even evidence that early physical therapy intervention may reduce women’s risk of lymphedema11. In summary, the PSM establishes a much-needed connection for survivors to access timely rehabilitation care, education regarding treatment side effects and exercise.

Clinical experience with the PSM at TurningPoint

The PSM was implemented at TurningPoint almost a decade ago. TurningPoint Breast Cancer Rehabilitation is non-profit, communitybased breast cancer rehabilitation clinic in Atlanta. The key assessment components at each timepoint include inquiry about symptoms

such as pain, fatigue, limb heaviness, numbness and tingling as well as measures of range of motion, strength, arm volume and upper extremity and overall function. Individualized and ongoing education regarding potential side effects of treatment, the importance of early detection and intervention as well as exercise are woven throughout the model.

Additional inquiry and testing are added based on a patient’s needs and cancer care plan. Examples include assessment of axillary cording in the early weeks following surgery and sensory and balance testing prior to and during neurotoxic chemotherapy.

When issues are identified at each evaluation timepoint, physical therapy intervention may include a combination of:

• Manual therapy, therapeutic exercise, balance training

• Lymphedema management, such as compression, exercise, manual lymph drainage, self-care and targeted stretching

• Individualized aerobic and strength exercise program in the clinic, at home and/or in a community-based program

Key Assessment Components of the PSM at TurningPoint

1 Inquiry regarding:

3 Symptoms including pain, numbness and tingling, arm heaviness and signs of swelling

3 Usual exercise level

3 Limitations in activities and/or usual work, family and social roles

2 Range of Motion and Strength

3 Upper Limb Volume (Perometer12 or LymphaTech13,14)

4 Patient Specific Functional Scale15, Upper Extremity Functional Index16 and FACT-B17

• Referral to other rehabilitation providers, including nutrition, counselling, massage therapy

The general guidelines for evaluation are pre-operative, early post-operative (2-4 weeks) and then at approximately 3, 6, 9 and 12

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months. Our experience is that the majority of patients evaluated in the early post-operative phase have significant pain, range of motion limitation, axillary cording and/or functional limitations and active physical therapy intervention is initiated. Once treatment goals are met, the patient continues with ongoing surveillance based on their risk factors and individual cancer care plan.

While the PSM provides a roadmap for breast cancer rehabilitation, we find that detours are common. One of the challenges in our clinic has been to evaluate patients preoperatively. This is due to the difficult logistics of referral to a community-based clinic in the very stressful and busy weeks following a breast cancer diagnosis and prior to surgery. We find that patients entering the PSM in the early post-

operative phase still reap the benefits of early detection of treatment side effects, education and exercise provided by the PSM.

We examined the logistics and impact of implementing the PSM in a large inner-city hospital in Atlanta18. Patients were evaluated in the surgical clinic, facilitating pre-operative and early post-operative evaluation. Barriers to long-term follow up, however, included

L&R CAN INC.

Left: Measure of right arm volume using perometer. Right: Measure of arm volume using LymphaTech, a new iOS compatible software application that utilizes 3-dimensional imaging to calculate arm volume.

transportation and work limitations. In this setting, a rehabilitation navigator to communicate with patients and confirm follow-up appointments improved the effectiveness of the PSM model.

The PSM can be adapted to different settings and resource availability. It is ideally individualized based on the type and phase of surgical and medical treatment, risk factors for development of side effects such as lymphedema, ability to be independent with exercise and patient preference.

Patient perspectives on the PSM

A woman’s breast cancer experience is complex, affecting all aspects of life during and following treatment. Women often report being uninformed regarding common side effects of breast cancer treatment, including lymphedema, upper extremity motion restriction, fatigue, weight gain, pain, and chemotherapy-induced peripheral neuropathy [CIPN]. They are often shocked that they do not always resolve after treatment, but remain part of their lives19. Breast cancer patients express strong, unmet needs for education, information and rehabilitation intervention for these side effects.

The PSM empowers patients with knowledge by providing education and information about treatment side effects. The incidence and burden of side effects is reduced through early identification and timely rehabilitation. Integration of exercise throughout the model benefits patients at every phase of survivorship. The critical role of exercise in reducing breast cancer recurrence is emphasized and individualized exercise plans based on patient preference and phase of treatment are facilitated. In our experience, the PSM meets the often-expressed needs of survivors for information, guidance and intervention and improves the overall quality of life for individuals diagnosed with and treated for breast cancer.

Real life experience with lymphedema and the PSM

Tina (not her real name) was a 36-year old mother of a preschool child when she was referred to physical therapy four weeks following a left mastectomy and tissue

expander. Ten axillary lymph nodes were removed on the left and two were positive for cancer. Tina was told by a healthcare provider at the hospital that she would not be able to continue to participate in her passion of ballet dancing because it may cause lymphedema. She was devastated and very fearful about her risk of lymphedema. Physical therapy treatment was initiated at Tina’s first post-operative visit to address pain, axillary cording and significant loss of shoulder motion and function.

Education was woven into her treatment program, including:

• Replacing lymphedema myths with evidence-based facts

• Clarification of risk factors, triggers and Tina’s individual risk of lymphedema

• Importance of early detection and signs and symptoms of early lymphedema

• Importance of exercise – including dancing - for patients at risk for and with lymphedema

After eight physical therapy treatments, all measures had improved. Tina gradually returned to exercise, including dancing. A PSM plan was set up to follow Tina through her planned chemotherapy, radiation and beyond as needed.

At Tina’s PSM evaluation timepoint nine months post-op and three months after radiation was completed, a 5% increase in left arm volume (compared to baseline

volume difference) was noted at her evaluation. There was very mild swelling noted between the flexor tendons at her left wrist. It was determined that she had mild lymphedema and she was advised to continue her regular exercise program and provided with a Class 2 compression sleeve to wear during the day. On re-evaluation in two weeks, there was no evidence of lymphedema and volume had returned to baseline. Tina was advised to continue exercising and adjust the wearing time of her compression sleeve based on symptoms for ongoing maintenance. Our long-term goal was to prevent progression of Tina’s lymphedema. This was monitored with self-evaluation and periodic volume measures in the clinic every 3-4 months and at longer intervals in subsequent years. Tina has achieved her goal and maintained her lymphedema at less than 8% for over five years and Tina continues her passion of dancing.

Application of the PSM for patients with other cancer diagnoses

Virtually all patients going through cancer treatment have significant side effects of treatment, including lymphedema risk. The PSM has potential application to other types of cancer and could potentially decrease the impact of cancer by facilitating early detection and rehabilitation intervention for issues common to many cancers such as lymphedema, pain, CIPN, balance issues and loss of function. LP

A full set of references can be found at www.lymphedemapathways.ca

In our experience, the PSM meets the oftenexpressed needs of survivors for information, guidance and intervention and improves the overall quality of life for individuals diagnosed with and treated for breast cancer.