Survivorship and Previvorship

Survivorship and Previvorship

Experts use the word "survivor" for any person who has been diagnosed with cancer at any stage. Survivorship refers to the short- and long-term health and wellness concerns of people who have been diagnosed with cancer. 

A previvor is a person with an increased risk for cancer who has not been diagnosed. The term recognizes the unique concerns of high-risk people, many of whom must make medical decisions and take steps to manage their risk for cancer. 

The effects of cancer, treatment and prevention begin at diagnosis but they can last long after medical care ends.

Follow-up care after treatment or prevention

Even after a treatment or procedure ends, it is important for cancer people to receive ongoing follow-up care from a doctor who can address the issues listed below.

The National Comprehensive Cancer Network recommends that patients be checked annually by their oncologist or primary care doctor for special health issues, including: 

• cardiovascular (heart) disease
• emotional distress
• cognitive (memory and thinking) issues and fatigue
• lymphedema 
• menopause symptoms
• pain
• sexual dysfunction
• sleep disorders

For many of the health issues listed above, exercising regularly, eating a balanced diet and maintaining an ideal body weight can improve health outcomes. Research on ways to improve health and quality of life in cancer survivors is ongoing. 

Some doctors provide their patients with a "survivorship care plan" that outlines the care the patient received and provides a list of recommended follow-up visits, late-onset symptoms to watch for and recommended care. It is very important that you speak with your doctor and have a plan for long-term care, including:

• which doctors you should see, and how often.
• which tests should you have done, and when.
• what symptoms to watch for and who to report them to.

Heart disease

People diagnosed with cancer have a greater risk for heart disease than people who have never been diagnosed. Some cancer treatments, including chest radiation, and certain chemotherapy and targeted therapy agents can cause heart damage. Other risk factors include early-onset menopause from treatment or surgery and a family history of heart disease. 

NCCN survivorship guidelines recommend that cancer survivors be regularly checked for heart disease:

• Doctors should review patients' medical history and note any treatments that increase risk for heart disease.
• Doctors should check patients for other heart disease risk factors, including high cholesterol, diabetes, smoking, obesity, early-onset menopause and a family history of heart disease.
• Doctors should examine patients for signs of heart disease. 
• Patients showing evidence of heart disease should have a complete cardiac exam, including imaging (e.g., echocardiogram), EKG and blood tests.

Because heart disease that is caught early is more treatable, it's important for cancer survivors to receive follow-up care for heart disease and to report to their doctor any shortness of breath, abnormal heart rhythm, chest pains or other symptoms.

Cognitive function and fatigue

People diagnosed with cancer often report trouble with their memory and abilty to think clearly, also known as cognition. This change can persist even years after treatment ends. Chemotherapy and other treatments may effect memory; patients sometimes refer to this as "chemo-brain." Other factors, like early-onset menopause, stress and anxiety may also affect memory. In many cases, memory changes associated with cancer improve over time. 

Like memory issues, fatigue is common in cancer survivors and can persist years after treatment. Many of the causes and approaches to fatigue are similar to those for memory.

NCCN guidelines recommend that doctors ask cancer survivors about changes in memory and thinking and their experience and level of fatigue as part of their regular visits. Patients who report cognitive changes or fatigue should be checked and treated for underlying causes including depression, sleep disturbance and medication side effects. The guidelines recommend that survivors limit alcohol and drugs that can affect memory, sleep quality and energy level. 

Some research has shown a benefit from yoga, exercise, mindfulness, meditation and cognitive training. Research has shown some benefit from the medication Modafinil, a drug used to treat sleep disorders.

Lymphedema

Lymphedema is fluid buildup and swelling that develops in the arms, legs or other part of the body, usually as a result of surgery that removes lymph nodes or radiation therapy. The swelling and fluid may be mild to severe and can cause pain, infection and loss of mobility. 

Although symptoms of lymphedema may not always be obvious, it is important for people who have had surgery, radiation or lymph nodes removed to report any persistent feeling of heaviness, pain or discomfort, muscle weakness, tightness or swelling to their doctor. 

Lymphedema is usually managed with special massage and compression garments. This is most effective when it is caught early. In some circumstances, lymphedema that progresses can be managed with surgery. The right type of weight training under supervision and physical activity do not worsen lymphedema and in fact, may help to lower risk.

Sleep

Sleep is important to overall wellness. There are many different reasons why survivors and previvors may suffer from sleep disturbances. The NCCN recommends that doctors ask patients about their quality of sleep and check for underlying medical causes of sleep disturbances. Sleep experts can help develop plans for treating sleep disorders. Treatments may include behavioral therapy, strategies for improving sleep habits, supplements and medication.