Christine M. Duffy, MD, MPH
The office of Cancer Survivorship and the National Coalition of Cancer Survivorship (NCCS) defined cancer survivorship quite broadly in 2006: “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.”1
The inclusion of patients from the time of diagnosis and encompassing family, friends, and caregivers is central to moving survivorship care forward. This is especially true for breast cancer survivorship, which has high survival rates for early disease and the emergence of novel treatments for advanced cancers.
The 5-year survival rate for patients with localized breast cancer is 98.8%. For those with regional metastasis, it is 85.5% and for those with distant spread, it is 27.4%.2
Despite the Office of Cancer Survivorship and the NCCS’ broader vision of cancer survivorship, the reality is that survivorship has been focused on patients with early-stage disease, after curative cancer treatment is completed and has rarely incorporated family, friends, and loved ones. A central recommendation in the report was the creation of a survivorship care plan (SCP) to include details of their treatment, recommendations for surveillance, screening for treatmentrelated sequelae, secondary cancers, age-appropriate cancer screening, and lifestyle changes such as a wellbalanced diet and regular exercise.1
While serving a crucial role in highlighting the importance of survivorship issues, the focus on SCPs has perpetuated a more narrow focus on the time of treatment completion and shifted focus away from viewing cancer survivorship as a continuum from diagnosis to the end of life.
The recent changes made by the NCCS, which eliminate strict quotas for SCPs and now require the creation of a “Survivorship Program,” reflect this recognition that survivorship care cannot be encapsulated in the SCP. This presents an opportunity to rethink survivorship care and shift awareness from the end of initial care treatment to include the entire spectrum of the cancer journey.
What would such a breast cancer survivorship program look like, if we aimed to be more inclusive by initiating care at diagnosis? Fitzhugh Mullan, MD, a cancer survivor himself, outlined the different “stages” of cancer survivorship in 1985.3
The first “acute” phase is focused on the new diagnosis and treatment challenges, followed by the “transition” phase, which reflects the challenges survivors face as they transition from active treatment to observation. These are followed by the “extended” or “permanent” phases. The “extended” phase includes not only those with no evidence of disease but also those who are alive with their cancer in remission but on maintenance treatment, whereas the “permanent” phase includes those cancer-free traditionally thought of as “cured” but who may be living with long-term consequences of their treatment, or experiencing a second unrelated cancer or treatment-related cancer. The challenges survivors face may change as the patients transition through the phases, but there are some challenges survivors must face early on—for instance, fear of recurrence— that can resurface at any time.
During the “acute” phase when patients are first diagnosed with breast cancer, the major challenges are related to the shock of diagnosis and treatment-related decisions. Up to 50% of patients report feeling “severe” distress when they are first diagnosed.4
Sleep disturbance and fatigue are experienced by roughly a quarter and stress and worry regarding decisions about cancer treatment choices, partners, and children are also common. Decisions about surgical treatment, reconstruction, and fertility preservation when indicated, are crucial to long-term physical and mental health. However, only a minority of patients report feeling fully informed when making these decisions.5-8
Integrating survivorship from the beginning of diagnosis shifts the focus for patients and reinforces the essential nature of these discussions. Patients need not feel that they “should be happy just to be alive”—they should thrive. Introducing survivorship at the start provides women the encouragement and permission to ask about these issues.