Improving Cancer Survivorship: Embedding Tailored, Comprehensive Survivorship Care in the Breast Oncology Clinic

Ann Partridge, MD, MPH

Sandy Truong

Dana-Farber Cancer Institute

Optimal cancer survivorship care involves addressing a patient’s physical and psychosocial concerns during the period of time from diagnosis through the balance of life. Conventionally, for patients with early-stage breast cancer, the survivorship period is usually considered the time after initial active therapy (surgery, chemotherapy, radiation therapy). While many patients will remain on chronic endocrine therapy, it is during this time that patients are trying to recover from the acute toxicities of treatment, adjust to their “new normal,” and grapple with their futures.

Providers can help patients with breast cancer during this period of adjustment and beyond by attending to both individual patient concerns and problems as well as providing comprehensive survivorship-focused care, including: (1) surveillance, screening, and prevention of recurrent and new cancers, including screening for genetic risks, if appropriate; (2) counseling and referrals to improve modifiable health behaviors; (3) identification, counseling, and management of late and long-term effects of cancer and cancer treatment; and (4) coordination of care between providers to prevent gaps in noncancer care and avoid redundant or unnecessary care.

In the 2005 landmark report From Cancer Patient to Cancer Survivor: Lost in Transition, the Institute of Medicine recommended improving comprehensive survivorship care and that all survivors receive a care plan to map their survivorship care.¹ However, our group and others have shown that there is substantial heterogeneity in survivorship care, and there has been only limited uptake and implementation of survivorship care plans.^2,3

To improve the delivery of this comprehensive care approach to all breast cancer survivors, the Dana-Farber Cancer Institute’s Adult Survivorship Program has developed and launched a novel Embedded Survivorship Program in the Breast Oncology Clinic. All patients who are completing active treatment are scheduled for a survivorship visit with one of their providers in early follow-up.

At that visit, a treatment summary and survivorship care plan is generated for the patient in the electronic medical record. Working from a survivorship care plan template, patients are counseled based on evidence- and consensus-based guidelines we have created regarding their disease risks, future breast cancer screening and follow-up recommendations, primary care and gynecologic care recommendations, management of potential long-term and late effects, and optimal health behaviors after breast cancer. This process is providing a framework to our providers to deliver comprehensive survivorship counseling and care to all breast cancer patients early in the course of their survivorship.

Table. Issues to Address in Breast Cancer Survivorship

• Providers needed and visit frequency
• Screening of remaining breast tissue
• Counseling regarding when to call and symptoms to watch for and lack of benefit for screening for metastatic disease for women with early breast cancer
• Sexual functioning and menopausal symptoms
• Genetic counseling
• Bone health
• Adherence with hormonal therapy
• Health behaviors: weight, diet, exercise, smoking cessation, alcohol moderation
• Fertility and contraception
• Psychosocial health, fear of recurrence
• Gynecologic care
• Primary care physician follow-up care
• Other specific issues tailored to patient (eg, cognitive concerns, lymphedema)

The Table on the left outlines the major issues that are addressed with patients during the survivorship visit. Of utmost concern, breast cancer survivors are at risk for locoregional or distant disease recurrence and new primary disease. To reduce rates of recurrence and breast cancer mortality, evidence- based guidelines recommend regular history and physical exam and surveillance mammography during follow-up care. Providers should promote continuation of chronic treatment (eg, adjuvant endocrine therapy) and lifestyle modifications to improve general health and reduce risk for cancer. Lifestyle factors, such as diet, alcohol consumption, weight and weight gain, physical activity, and smoking have all been found to be associated with risk of developing breast cancer and with prognosis after a diagnosis. Appropriate patient education and counseling, as well as facilitating referrals, may help patients to have improved quality of life with less fatigue, and possibly decrease risk of breast cancer recurrence and improve survival. Additionally, breast cancer survivors may be at increased risk of heart disease, diabetes, and osteoporosis, all of which benefit from improved health behaviors.

Breast cancer survivors may also face long-term and late effects from local and systemic therapies. Long-term effects are problems that become apparent during treatment and persist, while late effects are those that do not become apparent until after treatment has ended. Long-term and late effects of systemic therapy include osteoporosis, premature menopause, infertility, sexual dysfunction, psychosocial distress, weight gain, fatigue, and cognitive impairment.

Bone health is of particular concern because the majority of survivors are postmenopausal and chronic treatments such as aromatase inhibitors may increase risk for fractures by causing bone thinning. Survivors should be managed with regular DEXA scans and vitamin D and calcium supplements, if needed.

In addition to physical concerns, psychosocial distress, such as depression, anxiety, fear of recurrence, financial, work, and family stressors can negatively impact quality of life. Additional counseling and/or referral to resources or specialists may be beneficial. Most importantly, many of these long-term and late effects of cancer therapies can be managed effectively, and some even prevented, if care is initiated early and maintained as needed throughout survivorship.

The wide spectrum of long-term and late effects indicates that many providers may be involved in the care of survivors. It is crucial that optimal communication and coordination occur among survivors’ providers for both cancer- and noncancer-related care. The Dana-Farber Cancer Institute’s Adult Survivorship Program is working with each disease center to help providers meet all four goals of cancer survivorship care. The Adult Survivorship Program’s care team consists of general providers for counseling, support, and health promotion, internists with expertise in survivorship care, as well as specialists, such as cardiologists, gynecologists, and endocrinologists, for specific health concerns. This facilitates coordination of care and communication among providers who may be addressing different aspects of the survivor’s physical and/or psychosocial needs. This care team model promotes comprehensive, quality long-term care for cancer survivors.

The vast majority of patients with breast cancer will become survivors. They are the largest group of cancer survivors, currently making up nearly a quarter of the 13 million cancer survivors in the United States. This growing population highlights the need for greater awareness of issues facing breast cancer survivors and improved coordination of care for both cancer-related and noncancer-related care among providers. At the Dana-Farber Cancer Institute, we are working within disease centers, with subspecialists focused on specific survivorship issues, and with providers in the community to improve early and later survivorship care.

1. Hewitt M, Greenfield S, Stovall E. Institute of Medicine. From cancer patient to cancer survivor: lost in transition. http://bit.ly/Zg5Cqk. Accessed January 31, 2011.
2. Mayer EL, Gropper AB, Neville BA, et al. Breast cancer survivors’ perceptions of survivorship care options. J Clin Oncol. 2012;30:158-163.
3. Birken SA, Mayer DK, Weiner BJ, Survivorship care plans: prevalence and barriers to use. J Cancer Educ. 2013;28(2):290-296.