The inclusion of patients from the time of diagnosis and encompassing family, friends, and caregivers is central to moving survivorship care forward, especially for breast cancer survivorship, which has high survival rates for early disease and the emergence of novel treatments for advanced cancers.
Christine M. Duffy, MD, MPH
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.
The “transition” phase from active treatment back to “normal life” can be fraught with anxiety and fear regarding patients’ “new normal.” This has been the traditional start of most survivorship programs and is often the time of most anxiety for patients—gone is the close contact with the oncology team with frequent visits and checkups. Programs that help women to manage their anxiety regarding fear of recurrence are essential and have been shown to decrease distress and fear of recurrence.9,10
This is also time for a teachable moment for breast cancer survivors, regarding lifestyle changes. Having a body mass index above 30 is associated with a 35% to 40% increased risk of breast cancer recurrence and death. Weight gain after diagnosis has been linked to worse survival outcomes in patients with breast cancer.11-14 The importance of maintaining a healthy weight and preventing weight gain after treatment is well recognized by oncologists. In a national survey of US oncologists, high rates of counseling regarding weight management, physical activity, and diet in patients with cancer were observed, but specific referral to support lifestyle changes was lacking.15
If we do not provide the support, guidance, and referral to help patients achieve or maintain a healthy weight, we risk appearing to blame survivors for their disease or its recurrence. Medications, physical sequelae such as neuropathy, and fatigue can often pose a barrier to exercise and need to be addressed. Given the shortage of oncologists in the United States, counseling and referral regarding these lifestyle changes may best be addressed by a survivorship program that can make the referrals and ensure such connections happen.
In the “extended” phase of survivorship, which includes those in remission or on maintenance therapy, the focus shifts to symptom management related to active cancer treatment or maintenance therapy, as well as sequelae of initial cancer treatment. With innovations in treatment such as targeted therapies and in immunomodulators, patients with metastatic breast cancer can achieve progression-free or disease-free long-term survival. However, these medications can also cause death and significant disabling adverse effects such as colitis, hepatitis, neuropathies, skin disorders, and atypical infections.16
Effects can be protean. The specific events depend on the biological target; life-threatening complications often result from infections, inhibition of angiogenetic pathways, severe inflammatory syndromes, and autoimmune disorders.17 Primary care providers consistently report knowledge gaps in caring for survivors.18 Patients may see their primary care providers for seemingly simple illnesses when in reality, they could be experiencing life-threatening toxicities. In cases such as these, patients may require the coordination and involvement of several specialists with expertise in identifying and managing these toxicities.
For survivors living with metastatic cancer who have prolonged response to treatment, addressing other chronic medical issues such as diabetes, hypertension, and heart disease remains crucial. Survivors can sometimes lose sight of this and need to be reminded that they can still suffer the complications of diabetes or have a stroke related to hypertension or myocardial infarction from poorly controlled coronary artery disease. Other patients may be physically well with prolonged responses to treatment but will often have important worklife issues. These concerns include the impact of cancer on their employment and careers, insurance and disability concerns, and parenting while living with metastatic disease. They may be thriving but can still benefit from the support of survivorship services.
In the “permanent” stage of survivorship, the patient is “cured” of their cancer. For breast cancer survivors, this is a little less clear, as patients with hormone-sensitive breast cancers can have recurrence more than 20 years after diagnosis.19 Still, this “permanent” stage typically means that the patients have transitioned back to their primary care provider. These long-term survivors are at risk of secondary cancers, often many decades after their initial treatment.
For patients to fully live their years healthy and cancer-free, they need to turn their focus to the health behaviors that have been shown to prevent recurrence, prevent new cancers with age-appropriate screening, and prevent cardiovascular disease (which remains the leading cause of death among women).
Physical activity and maintaining an optimal weight are essential in preventing the agerelated diseases all people are susceptible to, and regular physical activity has been associated with reduced breast cancer and all-cause mortality.20,21 Physical activity ≥360 minutes per week was associated with a marked reduction in cancer-specific mortality (HR, 0.30; 95% CI, 0.13-0.70) and all-cause mortality (HR, 0.41; 95% CI, 0.21-0.79), whereas less intensive exercise (150-359 minutes/week) was associated with reduced all-cause mortality (HR, 0.55; 95% CI, 0.31-0.97).22 Exercise offers additional benefits including helping with depression and anxiety, cardiovascular disease, and arthritis, which are all common issues that long-term survivors may face. However, the challenges to staying active in breast cancer survivors due to neuropathy, osteoporosis, and weight gain are real. Attention to survivorship during this phase is equally important as at the start of the cancer journey.
Conceptualizing survivorship as starting at diagnosis has many important advantages as previously outlined. Many issues overlap throughout the different phases of survivorship, and a survivorship program can provide a bridge through phases and remain a source of information, support, and referral. Patients are encouraged to fully engage in treatment and fertility decisions that affect the remainder of their lives. Support to aid survivors in achieving a healthy weight can be provided early on, and exercise can be introduced and encouraged through all phases of care. Patients diagnosed with metastatic disease, who generally never receive survivorship services, should be included, as well as the many patients who are living longer with recurrent disease. By redefining the term survivorship and beginning services at diagnosis, patients will be encouraged to look to their future from the start.