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Who is a Cancer Survivor?

The number of survivors continues to increase.

One of every three men and women will be diagnosed with cancer in their lifetimes. The National Cancer Institute reports that in 2019, there were an estimated 16.9 million cancer survivors in the United States, with a projected increase to 21.7 million by 2029. The majority of survivors, 64%, are 65 years or older.

 

Screening & early detection make a difference!

 
Prostate, breast, and colorectal cancers are the most common diagnoses among survivors. Increased survival rates are attributed to improved screening, early identification of cancer, and improved and new treatments for cancer and its side effects.

 

Who is a survivor?

 
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 of 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, 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 responds 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 their life is once again their own. Only recently has research with cancer survivors revealed long-term effects 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. Long-term effects include heart disease, 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. The healthcare system remains fragmented without coordinated care and timely communication among providers. Two, knowledge is scarce regarding appropriate cancer survivor care guidelines. And third, the 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. However, survivors have demanded that their unique needs be addressed. As a result, cancer providers adapt 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 is detailed, as are recommendations for maintaining health.
Over the last few decades, cancer research has greatly impacted how cancer is detected and treated. As a result, cancer patients, empowered with knowledge and partnered with healthcare professionals, generally emerge from their cancer journey with improved outcomes, quality of life, and hope that they, too, can be survivors.

 

Helpful Resources:

National Cancer Institute

Facing Forward: Life After Cancer Treatment

When Someone You Love Has Completed Cancer Treatment

American Cancer Society

Cancer Survivors Network

OncoLink

Survivorship Care Plan

Centers for Disease Control

Cancer Survivors

National Coalition for Cancer Survivorship

Survivorship Resources & Checklist

National Cancer Survivor Day® Foundation, Inc.

Cancer Survivorship Resources

Caring Bridge

CaringBridge.org

Surgeon General

My Family Health Portrait

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