Quality of Life for Patients and All Those Affected by Cancer
For patients and the people who love them, a diagnosis of cancer brings challenges to many aspects of daily life, with a major concern being maintaining the highest quality of life possible during and after the experience. Quality of life is a concern that encompasses spiritual, psychological, emotional, financial and physical well being. It is influenced by age, sex, sexual orientation, urban/rural location, socioeconomic status, level of education, marital status, immigration status, culture, and access to health care.
The challenges may be similar for each family facing a cancer diagnosis, but the solutions will be unique. First, it is important that patients communicate concerns about their quality of life to the people who love them and to the members of their health care team. Family members may play a critical role in supporting the patient, but only if they are aware that these problems exist. Some cancer patients and family members find that meeting with others living through similar experiences in cancer support groups can also help them meet these challenges more effectively. The information included below might help serve as a “road map,” but each family must chart their own course with the ultimate goal of achieving and maintaining the highest quality of life possible following a cancer diagnosis.
All of the information below is from the National Cancer Institute. You may access the complete versions of their publications by following the links below, by visiting their Website, or by calling the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).
Some of the challenges that might impact quality of life following a cancer diagnosis include:
Fatigue is a common challenge for people living through cancer, especially those still receiving treatment. Fatigue is complex and may be difficult to describe. People with cancer may express it in different ways, such as saying they feel tired, weak, exhausted, weary, worn-out, fatigued, heavy, or slow. Fatigue has biological, psychological, and behavioral causes, but there are several things that might help reduce fatigue. However, it is important to speak to your health care team about your fatigue in order to find the best coping strategy. Here is the complete publication on fatigue and cancer by the National Cancer Instititute.
Sexuality and Fertility
Many cancer patients find that they do not experience sexuality as they did before their diagnosis. Sometimes this is due to physical changes, diminished energy levels, or a change in how they feel about themselves and their bodies. Try to discuss sexual concerns with your medical team. They can give you information about resolving many problems and can also assist you in seeing specialists who can help, if needed.
It is also very important to tell your partner about your physical needs and the changes you may be experiencing in your feelings about yourself and your relationships. Acknowledge that your sexuality concerns also directly affect your partner. This communication is vital to validate the losses your partner experiences due to these changes, as well as to promote reestablishment of intimacy.
Loss of fertility can also be a major concern for many cancer patients, depending on the type of cancer and treatments. While there are some options for preserving fertility, in general, these must be discussed with your physician prior to beginning treatments for cancer. Please discuss your concerns about your fertility with your health care team. Here is the complete publication on sexuality and fertility developed by the National Cancer Institute.
Appetite and Nutritional Concerns
A well-balanced diet is an important part of cancer treatment. Eating the right kinds of foods before, during, and after treatment can help the patient feel better and stay stronger. To ensure proper nutrition, a person has to eat and drink enough of the foods that contain key nutrients (vitamins, minerals, protein, carbohydrates, fat, and water). For many patients, however, some side effects of cancer and cancer treatments make it difficult to eat well. Appetite, taste, and the ability to eat enough food or absorb the nutrients from food may be affected. Malnutrition (lack of key nutrients) can result, causing the patient to be weak, tired, and unable to resist infections or withstand cancer therapies. Eating too little protein and calories is the most common nutritional problem facing many cancer patients. Protein and calories are important for healing, fighting infection, and providing energy. Here is the complete publication on nutrition and cancer developed by the National Cancer Institute.
Long-Term and Late Effects
Long-term and late effects are those conditions that can arise from treatments for many types of cancer. These effects may include relatively minor complications of short duration (skin changes due to radiation, or a temporary loss of the sense of taste due to chemotherapy) to potentially life threatening conditions (secondary cancers, or major organ damage). Cancer patients and their doctors should discuss the potential for long term or late effects of every treatment prescribed. However, it is important that the patient balance fears about long term and late effects of treatment with the immediate threat the cancer poses to their life. Long term or late effects of treatments are usually specific for the type of cancer and the treatments used. For more information on:
- Possible long-term and late effects for specific types of cancer, please see PDQ Treatment Summaries
(Please note: Two versions of each summary are available; one for patients and one for health professionals. More detailed information on treatment and on long term or late effects may be found in the professional version.)
Cancer patients may experience some pain throughout their treatment and recovery. It is important to know that cancer pain can be well managed in most patients with cancer or with a history of cancer. Although cancer pain cannot always be relieved completely, therapy can lessen pain in most patients. Flexibility is important in managing cancer pain. As patients vary in diagnosis, stage of disease, responses to pain and treatments, and personal likes and dislikes, management of cancer pain must be individualized.
Pain may be acute or chronic. Acute pain is severe and lasts a relatively short time. It is usually a signal that body tissue is being injured in some way, and the pain generally disappears when the injury heals. Chronic or persistent pain may range from mild to severe, and it is present to some degree for long periods of time. Some people with chronic pain that is controlled by medicine can have breakthrough pain — this occurs when moderate to severe pain “breaks through” or is felt for a short time. It may occur several times a day, even when the proper dose of medicine is given for chronic and persistent pain. The pain you feel may be from the cancer itself. Whether you have pain and the amount of pain you have may depend on the type of cancer, the stage (extent) of the disease, and your pain threshold (tolerance for pain). Most of the pain comes when a tumor presses on bones, nerves, or body organs. It can also be caused by the treatment or procedures for diagnosing cancer. Or you may have pain that has nothing to do with your illness or treatment. Like anyone, you can get headaches, muscle strains, and other aches and pains.
Whatever the source of pain, patients should discuss it with their health care team. Good communication is essential to manage cancer pain and maximize the quality of life for patients and their loved ones. Patients, their families, and their health care providers must work together closely to manage a patient’s pain. Effective pain management improves the patient’s quality of life throughout all stages of the disease. For more information on cancer pain see Cancer Pain Care and Pain Control: Support for People with Cancer from the National Cancer Institute publications on cancer pain.
Other Side Effects of Treatment
Side effects of cancer treatment can have a tremendous effect on a cancer patient’s life, and on those around him or her. Treatment related side effects are varied, depend on the type of treatment used, and will not be experienced by every patient receiving the same therapy. Some treatment related side effects include nausea, vomiting and other gastrointestinal problems; hair loss; mouth sores; sleep disturbances; and lymphedema. More information on these and other potential side effects related to treatment can be found here.
All people periodically throughout diagnosis, treatment, and survival of cancer will experience reactions of sadness and grief. When people find out they have cancer, they often have feelings of disbelief, denial, or despair. They may also experience difficulty sleeping, loss of appetite, anxiety, and a preoccupation with worries about the future. These symptoms and fears usually lessen as a person adjusts to the diagnosis. Sadness and grief are normal reactions to the crises faced during cancer, and will be experienced at times by all people. Since sadness is common, it is important to distinguish between “normal” levels of sadness and depression.
A person who cannot adjust to the diagnosis after a long period of time, and who loses interest in usual activities, may be depressed. Mild symptoms of depression can be distressing and may be helped with counseling. Even patients without obvious symptoms of depression may benefit from counseling. However, when symptoms are intense and long lasting, or when they keep coming back, more intensive treatment is important. Major depression is not simply sadness or a blue mood. Major depression affects about 25% of patients and has common symptoms that can be diagnosed and treated. An important part of cancer care is the recognition of depression that needs to be treated. It is important that cancer patients talk to their doctor or other member of their health care team about depression. Here is the complete publication on depression developed by the National Cancer Institute.
Fears of Recurrence and Fears of Death
People who face a diagnosis of cancer will experience different levels of stress and emotional upset. Fear of death, fear of recurrence, interruption of life plans, changes in body image and self-esteem, changes in the social role and lifestyle, and money and legal concerns are important issues in the life of any person with cancer. Many cancer patients and family members who experience these strong emotions find that talking with others who have gone through similar challenges helps them to cope.
Talk with your your health care team about ways to cope with your fears and other strong emotions, including finding a cancer support group in your area if you are interested in such programs. More information on dealing with the fears and challenges of living with cancer is available on the topics of coping with cancer , adjusting to a diagnosis of cancer and facing forward: life after cancer treatment.
When treatment ends, families often are not prepared for the fact that recovery takes time. In general, recovery from cancer treatment can take much longer than the time spent in treatment. Cancer patients often say that they didn’t realize how much time they would need to recover. This can lead to disappointment, worry, and frustration for everyone. Families also may not realize that the way the family works may have changed permanently as a result of cancer. They may need help to deal with the changes and keep the “new” family from falling apart.
Communication is key to coping with the challenges cancer brings into a family. Your family may want to deal with issues such as these on its own, or you may want to consider getting outside help. Ask your doctor or social worker to refer you to a counselor or therapist. An expert on family roles and concerns after cancer treatment can help your family solve its problems. Information is available on social relationships after cancer.
A diagnosis of cancer in one member of a family can lead to fears that other family members may be more likely to develop cancer as well. It is important to know that most cancer is not passed down through families. Only about 5 to 10 percent of the most common cancers (such as breast, colon, prostate) are inherited. Cancer genetic counseling is a professional assessment of an individual’s cancer risk based on their family cancer history. This information is also included in the complete publication on coping with life after cancer.
Research shows that cancer survivors who continue to work are as productive on the job as other workers. Most cancer survivors who are physically able to work do go back to their jobs. Returning to work can help cancer survivors feel they are getting back to the life they had before being diagnosed with cancer.
Whether returning to their old jobs or beginning new ones, some survivors are treated unfairly when they return to the workplace. Employers and employees may have doubts about cancer survivors’ ability to work. For more information on your legal rights, see Employment and Legal Rights. Here is the complete publication on vocational challenges following cancer.
Spiritual beliefs and practices, whether organized religion or a less formalized form of worship, can be a source of strength for some people. Cancer patients and their families may find new faith in a divine being and new hope from sacred writings when cancer enters their lives. Others find the ordeal of disease strengthens their faith, or that faith gives them newfound strength. Others never have had strong religious beliefs and feel no urge to turn to religion at such at time. However cancer patients have worshipped before their diagnosis, spiritual practices may be a source of comfort and solace during and after cancer treatment. Information on spiritual concerns during cancer is available here.
End of Life Issues
Approaching death often brings a change in how we look at life and what we value. For many people, having a serious illness leads them to live one day at a time rather than to put off until tomorrow, next week, or next year what could be done or said today.
There is no right or wrong way to face the end of life. Each person must find what is most comfortable and useful for his or her unique situation. Each of us is unique, and we each find our own way to live and die. Still, many patients with advanced cancer have feelings in common and may approach this time in their lives in similar ways. Feelings may come, go away, and then come again. It is important to realize that these reactions are not unusual; they are a part of the way we, as humans, make peace with ourselves.
When patients are first told or first realize that their cancer can no longer be treated effectively, they often react by denying that this could be happening to them. They believe they will find a way to beat the odds. This is a way of coping with an overwhelming situation, and it may be helpful at first. With time, however, patients and their loved ones are often able to face reality.
As illness progresses, depression from losses that already have occurred may give way to grief over the people and life that will soon be lost. This grieving should not be discouraged; it must be worked through to gain peace of mind and acceptance. Frequently, talking through these feelings with a loved one, clergy, social worker, counselor, or support group can ease the grieving process.
Not all people who face the end of life are able to find peace and accept death; however, with time and support from friends and family, acceptance is often possible. Patients need to know that everything that can be done for their peace and comfort will be done. It is extremely important for patients to communicate their feelings, fears and needs to their families, friends and their health care team. Here is the complete publication on facing the end of life with cancer.
Individual patients might experience all or none of the issues listed above. Links to publications from the National Cancer Institute containing information that may help a patient and his or her family cope with the challenges of surviving cancer are included in each section. In addition to this information, each patient might want to consider how he or she has successfully faced life challenges in the past and draw upon those resources already present in his or her life. Family members, co-workers and friends may all be sources of support, inspiration and comfort. Professional caregivers such as clergy, physicians, oncology nurses, oncology social workers, psychologists and psychiatrists may all have a role to play in helping the cancer survivor and his or her loved ones live a high quality life following a cancer diagnosis.
The Comprehensive Cancer Program supports survivorship initiatives that seek to help survivors and their caregivers cope with a cancer diagnosis (including the long-term effects of treatment) and encourage healthy behaviors among cancer survivors. Read more