How is a cancer survivor defined? Most cancer organizations such as the National Cancer Institute state that survivorship begins at diagnosis and extends throughout life. However, controversy exists about the definition among patients and healthcare professionals.
Some patients believe they are a survivor at diagnosis because they are actively fighting to survive. Others feel they are not a survivor until they have finished cancer treatments. Furthermore, some healthcare professionals believe a patient needs to be cancer free for five years before being called a survivor. These various definitions represent individual perspectives. Ultimately, cancer patients are best equipped to determine when, or if, to call themselves a survivor.
Phase One - Diagnosis and treatment
Generally, a cancer patient will move through three distinct phases. The first phase, often the shortest, is from diagnosis to the completion of initial cancer treatments. To cure cancer or to extend quality life requires intensive oversight of the patient and accompanying symptoms and side effects. This phase is frequently the most physically and emotionally distressing for patients to navigate resulting in heavy reliance on healthcare professionals and one’s support network.
Phase Two - Adjusting to the new normal after treatment
The second phase transitions the patient from treatment to extended survival with evidence that the disease is responding to treatment or is stable. Imaging, laboratory studies and appointments become less frequent and patients may be prescribed adjuvant therapies to prevent the recurrence or spread of the cancer. The risk of recurrence is highest in the first few years after treatment. Additionally, the late effects of treatment such as fatigue, cognitive impairment, neuropathies and pain syndromes may linger.
Phase Three - Moving past cancer
The final phase constitutes long term survival. Patients may no longer see the oncologist and feel that their life is once again their own. Only recently has research with cancer survivors revealed long term effects resulting from radiation and chemotherapy requiring assessment and management. Each patient’s long-term risk profile is unique and directly related to their health status, family history and the types, as well as duration, of treatments. Examples of long- term effects include heart disease including abnormal heart rhythms, restrictive lung disease, osteoporosis, infertility and digestive malabsorption. It is imperative that survivors continue to follow cancer screening recommendations and meet regularly with their primary care physician as they are at a higher risk of being diagnosed with a second cancer.
Many cancer patients experience anxiety, frustration and confusion once the acute phase of the journey is completed. Three major factors contribute to dissatisfaction on behalf of both the providers and patients. One, the healthcare system remains quite fragmented without coordinated care and timely communication amongst providers. Two, there is a scarcity of knowledge regarding appropriate cancer survivor care guidelines. And third, expectations of patients and providers are not easily aligned in the face of a growing population of cancer patients, electronic documentation requirements and insurance policies.
Being informed: Survivorship Care Plan
Cancer providers have focused for many decades on diagnosing and treating cancer. Survivors have demanded that their unique needs be addressed. Cancer providers are adapting to the ever-changing cancer landscape by treating the whole person not just the disease, offering integrative and palliative services, and developing survivorship programs. A large piece of the survivorship puzzle is a tool known as the Survivorship Care Plan (SCP). The SCP, once completed, is given to the patient to guide their future cancer health care. The SCP, completed by the oncologist’s staff, is a comprehensive, individualized summary of treatment dates, providers, names and doses of treatments, toxicities; and a schedule of follow-up imaging, lab-work, screening and appointments. Education regarding late and long-term effects are detailed as are recommendations for the maintenance of health.
Cancer research, over the last few decades, has greatly impacted the way cancer is detected and treated. Cancer patients, empowered with knowledge and partnered with healthcare professionals, are generally emerging from their cancer journey with improved outcomes, improved quality of life and a hope that they too can be a survivor.