The word “survivorship” is often used in several different ways. One common definition is a person without cancer after finishing treatment. Another common definition is the process of living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to receive treatment to either reduce the risk of the cancer coming back or to manage chronic disease.
The NCCN Survivorship Panel supports the NCI’s definition of a cancer survivor: “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 and included in this definition and are therefore included in this definition.”
No matter how it is defined, survivorship is unique for every person. Everyone has to find his or her own path to navigate the changes and challenges that arise as a result of living with cancer.
A report issued by the US Centers for Disease Control and Prevention and the NCI and data from the American Cancer Society estimate that the number of cancer survivors in the United States increased from approximately 3 million in 1971 to 13.7 million in 2012. These numbers are predicted to reach almost 18 million by 2022. This striking increase is generally attributed to rising cancer incidence rates (mainly resulting from an aging population), earlier detection, and better treatment.
An analysis of the SEER database showed that 45% of survivors were 70 years of age or older in 2012. In fact, an estimated 1 of every 5 persons older than 65 years is a cancer survivor. Only 5% are younger than 40 years, and survivors of childhood cancer constitute between 0.5% and 3.0% of the survivor population. The most common cancer sites in the survivor population are breast, prostate, colon/rectum cancers, and melanoma, together accounting for approximately 60% of survivors.
The increasing population of cancer survivors presents several challenges and opportunities. Cancer survivors and caregivers have some of the same needs, and their needs change over time. The two most pressing challenges are meeting the needs of the growing population of older cancer survivors and providing care for survivors of childhood cancer who have treatment-related cancers and coexisting medical conditions.
The Effects of Cancer and Its Treatment
For some survivors, the consequences of cancer are minimal; these patients can return to a normal life after the completion of treatment. In fact, most cancer survivors report being in good general health and experience good to excellent quality of life.
However, many survivors do experience physical and/or psychosocial effects of cancer and its treatment. Some sequelae become evident during anti-cancer treatment (long-term effects), whereas others may not manifest for months or years after active therapy (late effects). The problems can range from mild to severe, debilitating, or even life threatening. Some problems are temporary or improve with time, whereas others problems are progressive or permanent.
A recent review suggests that at least 50% of survivors experience some late effects of cancer treatment. The most common problems in cancer survivors are depression, pain, and fatigue.
Physical problems in cancer survivors include pain, musculoskeletal issues, fatigue, and lack of stamina, urinary/bowel problems, lymphedema, premature menopause, cognitive deficits, and sexual dysfunction. The effects of cancer treatment on the heart and bone are also well known.
Importantly, subsequent malignant neoplasms commonly occur in survivors because of genetic susceptibilities (eg, cancer syndromes), shared causative exposures (eg, smoking, environmental exposures), and mutagenic effects of cancer treatment. Studies by individual cancer type show that the incidence of subsequent unrelated cancers ranges from 2% in survivors of malignant lymphoma to 30% in survivors of small cell lung cancer.
Cancer has positive effects on a significant portion of individuals, including strengthened relationships, a sense of gratitude or empowerment, and an increased appreciation for life. Many survivors, however, experience psychologic distress after active treatment, and some experience a combination of positive and negative psychologic effects. Distress can result from the fear of recurrence or death, or secondary to physical, social, or practical problems. In fact, as many as 19% of survivors meet the criteria for posttraumatic stress disorder.
Ways to cope
Finding ways to manage your stress will help lower your overall level of anxiety. Try different ways of reducing stress to find out what works best for you. This could include spending time with family and friends, rediscovering old hobbies, doing activities you enjoy, taking a walk, meditating, enjoying a bath, exercising, or laughing at a funny book or movie.
Despite your best efforts to cope, you might find yourself overwhelmed by fear or anxiety. If this occurs, talk with your doctor, clinician, or nurse and consider a referral for counseling.
Stopping tobacco use
Stopping tobacco use is the single most important change a person can make to lower future cancer risk. Tobacco is linked to an increased risk of at least 15 types of cancer. If you smoke or use tobacco of any kind, making an effort to quit can also improve your recovery and overall health. Exposure to secondhand smoke is also dangerous, so other members of the household should be encouraged to quit smoking, too. Many resources are available to help, including medication and counseling.
Reducing alcohol intake
In addition to tobacco, alcohol is another substance consistently linked to cancer. In general, experts recommend that women have no more than one alcoholic drink per day and men consume no more than two.
Choosing to eat meals filled with fresh fruits and vegetables, whole grains, and other unprocessed, low-fat foods may help cancer survivors regain strength after treatment. Nutritious eating can also reduce the risk of heart disease, high blood pressure, obesity, and diabetes. In addition, recent research suggests that some cancer survivors who make healthy food choices may have a lower risk of recurrence and live longer. Although most of these studies have focused on breast cancer, researchers have also noted these benefits in colon cancer and prostate cancer survivors, who eat healthy diets. A dietitian can help you understand your nutritional needs, make healthy eating choices, and create tasty and appropriate meal plans.
The American College of Sports Medicine recommends that survivors avoid inactivity. Start slow and build up. Aim to do at least 150 minutes of moderate aerobic exercise, like walking, every week and resistance (strength) training two or three days per week.
Research is starting to link exercise with improved quality of life for cancer survivors. Regular physical activity can help survivors reduce anxiety, depression, and fatigue; improve self-esteem; increase feelings of optimism; improve heart health; reach and maintain a healthy weight; and boost muscle strength and endurance. Exercise also reduces the risk of high blood pressure, heart disease, stroke, and diabetes. In addition, some studies have shown that exercising regularly may help prevent the recurrence of breast, colon, prostate, and ovarian cancers.
Being diagnosed with a serious illness like cancer is very stressful, and everyday life often adds to this stress. Learning how to manage stress is extremely important for your recovery. Experiencing high levels of stress for a long time has been linked to health problems and a lower quality of life. A big step in reducing stress can be made through small changes in your life, such as learning to say “no” to tasks you don’t have the time or energy to complete, doing your most important tasks first, and getting help with potentially challenging issues such as finances.
Other ways to manage stress include exercise, social activities, support groups, mindfulness, acupuncture, yoga, tai chi, massage, and other relaxation techniques. Many relaxation techniques can be learned in a few sessions with a counselor or in a class.
Standards for Survivorship Care
The essential components of survivorship care are Prevention of new and recurrent cancers and other late effects
- Surveillance for cancer spread, recurrence, or second cancers
- Assessment of late psychosocial and medical effects
- Intervention for consequences of cancer and treatment (eg, medical problems, symptoms, psychologic distress, financial and social concerns)
- Coordination of care between primary care providers and specialists to ensure that all of the survivor’s health needs are met.