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Quality of Life With Cancer Supportive Care by Ernest H. Rosenbaum, MD, and Isadora R. Rosenbaum, MA
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Introduction
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Do you have cancer? If so, you are aware that knowledge is power-and that acquiring the skills to maintain the highest possible quality of life is the goal. Knowledge about your type of cancer, treatment alternatives, and the proper supportive care can be key to achieving this goal.
What do we mean by quality of life? And how can you gain the knowledge you need to regain and/or maintain it, especially during a time of extreme anxiety and physical discomfort?
Under normal circumstances, most of us would probably define quality of life as companionship with family and friends, rewarding work (paid or volunteer), the knowledge that we make a difference in the lives of others, the freedom to pursue a multitude of interests, the joy of learning something new. The list is as varied as we are.
Under the abnormal circumstance of receiving a cancer diagnosis and undergoing treatment, these sources of satisfaction and self-esteem can be severely compromised. Quality of life diminishes very quickly when one is fearful, fatigued, in pain, enduring therapeutic side effects, or contemplating the possibility of treatment failure and death. Therefore, your first task in dealing with cancer is to regain your equilibrium by addressing these very real issues and creating a support system tailored to your needs.
Over time, the type of support you need will change, depending in part on the outcome of therapy, be it surgery, radiation, chemotherapy, immunotherapy, or any combination of these four modalities. The desired outcome is always to achieve a cure and, when that is not possible, to enable long-term survival with chronic disease. However, if neither of these results is feasible, the therapeutic goal changes to that of providing appropriate comfort care.
What does not change at any stage of cancer treatment is the singular goal of enabling each person to have the highest possible quality of life by helping them define their goals and needs and then offering them the appropriate supportive care services. In fact, supportive care has proven so essential an adjunct to the four traditional modalities that we consider it to be a crucial fifth dimension of cancer therapy after surgery, radiation, chemotherapy, and immunotherapy.
Supportive care includes nutrition programs to help reduce treatment side effects; exercise regimens; instruction in the many arts of mind and body control, such as biofeedback, tai chi, and self-hypnosis; individual or group counseling for the patient, family, and friends; intellectual and creative pursuits from chess to art and music therapy; and spiritual guidance. When evaluating your strengths and weaknesses, and pondering which supportive care services will increase your ability to cope, you should not feel it is a sign of weakness to seek help. On the contrary, it is a sign of strength-requiring a high degree of honesty and self-awareness-to recognize what you need and to take responsibility for getting it. In the process, you will hone your coping skills and rekindle hope-powerful weapons in your battle with cancer.
Sources of Information on Cancer Treatment and Supportive Care Options
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Your physician will be one of your primary sources of information about your type of cancer and treatment options. However, to fully absorb the details, you may wish to request permission to tape record your discussions-or ask a friend or relative to accompany you to take notes on what your physician tells you. This will enable you to thoroughly review the information in a less stressful environment than the physician's office-and to prepare a list of questions for your next telephone call or office visit. (If at any time during this process you have doubts about the proper course of action, or if you simply want reassurance from another physician, you should not hesitate to seek a second or even a third opinion. Your physician will understand.)
Many major cancer centers now have supportive care programs that include medical libraries with the latest publications of the National Cancer Institute (NCI) and the American Cancer Society. Most of these centers also issue newsletters with up-to-date articles on medical therapy and coping techniques, arrange lectures in supportive care, offer individual and group support sessions, and conduct classes in pertinent subjects. Two such centers in the San Francisco Bay Area are the Stanford Center for Integrative Medicine at Stanford University Medical Center and the Ida and Joseph Friend Cancer Resource Center at the UCSF-Mt. Zion Comprehensive Cancer Center. Both of these centers also maintain websites: http://www.cancersupportivecare.com for the Stanford Center for Integrative Medicine and http://cc.ucsf.edu/crc for the Ida and Joseph Friend Cancer Resource Center.
Among the many other useful websites on cancer treatment and cancer supportive care are:
- The Health Library at Stanford, a community service of Stanford Hospital and Clinics
- http://www.med.stanford.edu/healthlibrary/
- The National Cancer Institute's Library of Medicine (PubMed), accessible through the University of California, San Francisco website:
- http://www.library.ucsf.edu/db/pubmed .
This site, which has 11 million references and 4,300 journal titles, adds 8,000 new references per week.- The National Cancer Institute's Physician Data Query (PDQ)
- http://cancertrials.nci.nih.gov
- The National Cancer Institute's CancerNet
- http://www.cancernet.gov
- The American Cancer Society
- http://www.cancer.org
- The Leukemia and Lymphoma Society of America
- http://www.leukemia-lymphoma.org
- A comprehensive private website belonging to Alexandra Andrews
- http://www.cancerlinks.com
Mind and Body
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In keeping with Plato's discovery over 2,000 years ago that the physical and psychological elements of man are inextricably linked, health professionals today believe that a combination of medical therapy and supportive care offers the best chance to maintain a patient's quality of life. Such comprehensive care addresses a wide range of needs, from relief of the physical symptoms of cancer and cancer therapy to the craving for intellectual, creative, and spiritual sustenance. Satisfaction of these diverse needs proves Plato's dictum. For example, obtaining relief from pain, nausea, or fatigue restores a feeling of calm; getting sufficient sleep, appropriate exercise, and good nutrition are energizing; discussing one's negative feelings candidly with others with similar experience can diminish their power over us; learning to control blood pressure and heart rate through such means as biofeedback or self-hypnosis can produce a very real sense of personal power. Exploration of one's creative potential can lead to joy and transcendence; while examination of one's spiritual beliefs can help put the cancer experience in perspective, perhaps resulting in the establishment of new goals or reconfirming old ones. Attention to each of these components of self can help restore the freedom to act and to choose life.
This booklet touches briefly on some potential problem areas where advice and support from cancer professionals and other cancer patients can be useful. They include the many manifestations of psychological and emotional stress inherent in dealing with a cancer diagnosis and treatment. They also touch on the numerous, interrelated physical factors such as pain, fatigue, sleep disorders, nutrition, cognitive functioning, sexuality, and exercise.
Psychological and Emotional Support-and the Development of Coping Skills
When a person had cancer 50 years ago, there was little discussion of how he or she was coping. The person just dealt with it-probably feeling isolated as well as desolate. In the last 25 years, however, as cancer has increasingly become a chronic rather than a terminal illness, the concept of patients developing coping skills has received considerable attention from healthcare professionals. Even the federal government got involved and, in 1980, the National Cancer Institute published Coping with Cancer. In the 1990s, over 2,500 articles on some aspect of coping with cancer appeared in medical and mental health journals.-
Coping refers to the attitudes you develop and the actions you take to maintain your equilibrium and adjust to the stresses caused by cancer. Different people cope in different ways, but they share a willingness to make compromises to achieve remission and/or cure.
Of course, the nature of your psychological and emotional needs will change somewhat as you proceed from your initial diagnosis through cancer therapy. At the time of diagnosis, you are stunned. In an instant, your life has changed forever, no matter what the outcome of treatment. This may very well be one of the most difficult periods in dealing with your cancer-a time of shock, fear, and disbelief accompanied (in some people) by a feeling that cancer is a retribution for some previous misdeed. Of course, you wonder whether you'll survive, and if you do not survive, what the end will be like.
Other, more immediate concerns may touch on finances. You may worry about whether you have sufficient medical coverage, will be able to return to work, or can meet your daily living expenses without compromising your quality of life. Later, during cancer therapy, you or your family members may begin to suffer from the stress of living with chronic illness.
Whatever your concerns, you can benefit from talking about them and seeking some perspective. Fortunately, any number of people can serve as your sounding board-and you may very well need more than one. A social worker, psychiatrist, or psychologist; a clergy person; a sex therapist; a wise friend; another cancer patient or a support group-any or all will be familiar with the emotions you are experiencing.
One of the greatest services these people can render is to help you accept your cancer and at the same time make you realize you are in charge. You can choose your medical team, accept or reject their recommendations, seek second or third opinions, and-most important-determine how your family, friends, and colleagues will behave toward you. If you are able to discuss your disease and medical therapy in a matter-of-fact manner, they will respond in kind.
In other words, your relationships need not change. You can have the same give-and-take dynamic with family and friends that sustained you in the past-a mutual exchange of love and support that will improve your ability to fight for your life. You not only won't have to try to cope alone, but you can continue to derive strength from helping others find solutions to their problems. There are few more satisfying experiences in life than helping a person in need.
Diversions At first, the fact of having cancer and starting therapy will dominate your thoughts and schedule. All your priorities will change as you work out a course of action. However, as time passes and you begin receiving therapy and the appropriate support, you will resume your former activities.Now, more than ever, it is important to seek out the things you would normally do to lift your spirits, stimulate your mind, tap your creative potential. Concerts. Opera. Art galleries. Sports events. Chess. Card games. A series of interesting lectures or a class you always wanted to take. Alternatively, on your own or working with an occupational therapist or art therapist, you might enjoy painting, singing, playing a musical instrument, weaving rugs, clay modeling, or reading and writing poetry or stories. If nothing else, why not treat yourself to an occasional day of vacation and fun?
Spirituality At times of extreme vulnerability, we all tend to pay more attention to our innate spirituality and seek to restore a feeling of connectedness with the universe or an idea beyond ourselves. We may seek this liaison through prayer and renewed devotion to God and our religion, through ritual exercise such as tai chi or qi gong, or by immersion in the natural world. Whether private or shared with family and community, the nurturing of our spirituality is a vital component of coping with the unfamiliar and uncertain circumstances associated with chronic illness. And, in the event of treatment failure and progressive disease, it can help ease the pain of separation from loved ones and the things of this world. Leaving Instructions to Loved Ones We all know we are not mortal-an awareness that can enhance our daily lives when we are healthy. However, when faced with a serious illness, that same awareness can devastate us when we most need peace of mind and freedom to focus on getting well. One way to achieve this freedom is to make known our desires about the events none of us wants to contemplate-total incapacity and death. There are two good reasons for doing this: to ensure that we get our own way, and to avoid burdening our family and friends with the need to make painful decisions or with the fear that they might not be adhering to our wishes.Therefore, this is the time to issue clear instructions as to whether you want to be resuscitated if you have no chance of regaining a reasonable quality of life, and what you want done with your remains. In the former instance, you need only sign a durable power of attorney with specific instructions to your medical team. In the latter case, you will want to leave written instructions for your family and friends telling them how you want your remains handled, whether you want a funeral service, and so on.
If you don't have a will for the disposition of your estate, this is a good time to get that out of the way as well. You can always change it later. The act of leaving instructions on these matters is a gift to those you love.
Pain
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In a movement that has gained increasing momentum in the last twenty-five years, the medical community is giving pain the special attention it deserves. Today, many hospitals have special pain centers and pain-management programs. In addition, the American Pain Society urges that pain be considered a fifth vital sign, along with blood pressure, pulse, temperature, and breathing rate.
When pain occurs, it must be continually assessed and evaluated by the medical team or a pain management specialist, if available. During this ongoing process, these professionals determine whether the source of the pain is somatic (throughout the body), visceral (related to organs), or neuropathic (related to the nervous system). They then define the pain according to its intensity, quality, and frequency and recommend the appropriate means of intervention, which could be oral medication, injections (including nerve blocks), patches, or pumps. It is possible to have effective pain control with modern technology.
Fatigue
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Fatigue is unquestionably the most common symptom and the most debilitating side effect experienced by cancer patients. It can be generated by depression, fear, frustration, pain, sleep disturbances, poor nutrition, lack of exercise, worry about the future-almost anything. Fatigue is also a frequent side effect of radiation, chemotherapy, and immunotherapy. Indeed, the fatigue experienced both during and after treatment is often described as an unusual or excessive whole-body tiredness not easily dispelled by sleep or rest. Fatigue can also be short term (acute) or long term (chronic), but whatever its source or duration, it can profoundly detract from your quality of life.
Another cause of fatigue is anemia (low hemoglobin). Predominantly caused by the cancer itself or by therapy, anemia can be treated with one or more blood transfusions and/or drugs.
Cancer patients who are hypothyroid-a condition resulting from low thyroid hormone production-also experience additional fatigue and sluggishness. This condition can be treated with thyroid hormone replacement therapy.
Fatigue from all causes may be reduced by trying to control the symptoms of therapy and ensuring adequate sleep, daily exercise, and proper nutrition.
Sleep Disorders
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Sleep disorders such as insomnia, multiple awakenings, and early waking can be attributed to many causes, including depression, anxiety, stress, pain, and medication side effects. But whatever the reason, prolonged lack of sleep can reduce your efficiency and your ability to function. If you are experiencing any of these symptoms, you might consider asking your physician for referral to a sleep disorders clinic.
Sleep disorders can be treated with appropriate, closely monitored medication, biofeedback, relaxation exercises, and good sleep hygiene-a regimen that includes such common-sense practices as maintaining a regular schedule for going to bed and waking up, avoiding naps during the day, and getting regular exercise. You will also want to avoid pain medicines that cause daytime drowsiness, antidepressants that cause insomnia, and caffeine and alcohol, which disturb sleep quality.
Nutrition
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Good nutrition is an essential part of cancer treatment. Quite simply, well-nourished people are better able to cope with the side effects of cancer therapy. They recover more quickly from surgery and may even tolerate higher doses of both chemotherapy and radiation. A well-balanced diet may also prevent the breakdown of body tissue, rebuild tissue that cancer may temporarily harm, and help maintain the body's immune system.
If you have questions about your nutritional needs, you should consult a nurse or a dietician. Either of them can also offer solutions to problems with swallowing, nausea, loss of appetite, or constipation-a condition that be can caused by pain medication, certain drugs and cancer therapies, poor nutrition, or immobility.
You might also inquire about classes in nutrition at the nearest cancer treatment center or check the center's library or a bookstore for one of the many guides on how to improve your nutrition and ]how to manage your food intake while on chemotherapy or radiation. In addition to our most recent book, Supportive Cancer Care, The Complete Guide for Patients and Their Families, there are many other excellent resources, including The Essential Guide to Nutrition and the Foods We Eat: Everything You Need to Know about the Foods You Eat, edited by the American Dietetic Association and Jean A. Thompson Pennington. HarperCollins, 1999.
Cognitive Functioning
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Many cancer patients on chemotherapy experience increased forgetfulness, a decreased attention span, and problems in concentration-symptoms that can be attributed to stress and fear. However, some patients, who reported fearing they were losing their mind, have dubbed these phenomena chemo brain Only recently, following extensive studies, has the medical profession confirmed that chemotherapy and brain radiation patients are susceptible to such neurocognitive dysfunction.
However, it is important to know that neurocognitive dysfunction is not a given. If it occurs with chemotherapy, it usually does so during or after treatment and is generally reversible several months after completing the course of therapy. If it occurs with radiation, it usually does so after treatment.
In most cases, cognitive dysfunction is minimal, limited to simple forgetfulness and loss of coordination. People with this level of dysfunction can benefit from physical, occupational, and speech therapies as well as group support and individual counseling. If possible, they should resume their regular routine as soon as possible (including returning to work) and keep their thought processes sharp by doing mind games and crossword puzzles, playing chess, and engaging in other mental exercises. There is also some indication that hormone replacement therapy (HRT) in the form of estrogen for women and testosterone for men may improve cognition function.
Although rare, the symptoms of cognitive dysfunction can be more severe, affecting the quality of life of the patient, family, friends, and caregivers. Then, more than ever, appropriate counseling and other supportive care services can alleviate some of the associated stress.
Sexuality
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A person's sexuality can be affected by the emotional or physical ramifications of cancer and cancer therapy. Anxiety about survival, the welfare of family members, or finances can inhibit the expression of sexuality, as can changes in body image that create concerns about desirability. Most of these psychological and emotional problems can be alleviated with the proper counseling and/or open discussion with your partner.
Alternatively, for sexual problems with a definable physical cause, there are corresponding medical actions. For example:
- A decline in-or loss of-erectile function is common in men with prostate cancer. It is caused by a reduction in testosterone from castration by either surgical or medical treatment. Various methods of help include vacuum constriction, injections, prosthetic penile implants, and prescription medications such as Viagra.
- After pre-mastectomy counseling, many women now elect to have reconstructive surgery.
- As a result of radiation to the pelvis, women can have a narrowing of the vagina, resulting in painful or difficult intercourse-a condition that can be treated by dilation and with special creams.
- Drugs such as Tamoxifen can cause a decrease or an increase in vaginal secretions-problems for which a gynecologist can suggest remedial measures.
If you are experiencing emotional or physical problems with your sexuality, you can take charge by discussing them with your partner and/or consulting your physician or a sex therapist. With proper counseling and/or appropriate medical intervention, the chances are excellent that you will be able to maintain or regain a healthy sexual self-image despite the temporary or permanent changes wrought by cancer.
Exercise
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Exercise is always essential to good health and, when you have cancer, it is more important than ever. The better the condition of your body, the better you will tolerate the side affects of chemotherapy, radiation, and other invasive treatments. For example, scientific research has documented that walking or bicycling three to five days per week produces the following benefits: decreased nausea, decreased fatigue, increased physical endurance, and increased quality of life. These benefits derive from increased muscle strength, improved gastrointestinal motility, and the production in the brain of endorphins, which elevate mood.
Physical therapists can design exercise programs to meet various stages of physical fitness-from in-bed exercises that can reduce the potential for general muscle wasting, to semi-strenuous exercises for the partially ambulatory, to exercises for those who are ready for a full regimen. In designing these programs, therapists consider each patient's cardiovascular endurance, joint flexibility, and muscular strength.
Stress reduction techniques such as self-hypnosis, yoga, biofeedback, meditation, tai chi, qi gong, acupressure, healing massage, or keeping a journal are activities that cultivate an inner calm and may even benefit your immune system. Tai chi is a gentle mind/body exercise program can strengthen muscle, improve coordination and balance, and promote peace of mind. Qi gong, which combines movement with meditation and breath awareness, strives for conscious control of the body's energetic system.
Exercise has another plus: It relieves boredom and, when performed with others, invariably produces laughter and feelings of camaraderie. It is important to remember that just as fatigue is cumulative, so is energy!
Current and Future Cancer Therapies
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In 1930, the cure rate was 20 percent. In 2001, it is over 50 percent with advances in immunology and chemotherapeutic drugs such as Gleevec, a new molecular therapy for chronic myelogenous leukemia; Herceptin, a monoclonal antibody for breast cancer; and Rituxan, a monoclonal antibody for lymphoma. Other advances in molecular biology allow us to block a single enzyme or protein and stop the growth of cancer cells. For example, we can inhibit or stop angiogenesis (blood vessels supplying tumors) with VEGF (vascular endothelial growth factor). Iressa, another anti-growth factor, helps prevent cancer cell growth in many cancers.
Because of these and other advances in cancer research, you should not focus on statistics concerning your illness. Statistics can give you a general idea of the odds for getting better or having a recurrence of disease. But they only represent averages. And you are not 40 percent of anything!
Even if your odds seem poor, you have a better chance of beating them if you have endurance, courage, and a strong will to live. As Lance Armstrong says:
Anything is possible. You can be told you have a 90 percent, or a 50 percent, or a 1 percent chance. But as long as you take that chance and believe in yourself and are a brave person, and then want to live and want to be better than before . . . . I'm living proof that you get a second chance, and the second time around is better than the first.
Summary
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Cancer is an assault on your quality of life. The extent to which this occurs will depend on many factors:
- Your mental and physical status before diagnosis
- Your attitude toward your disease-your willingness to make compromises, undergo therapy, and take advantage of every supportive care service that will help reduce stress and increase your coping skills
- The stage of your disease at the time of diagnosis
- The type of cancer-e.g., the quality of life of lung cancer patients is affected in different ways than that of leukemia patients
- The quality of support you receive from family and friends
- The extent to which the side effects of therapy can be controlled
- The ultimate success or failure of therapy
Although your quality of life ultimately depends on the outcome of treatment, there is always something you or your medical team can do to improve it-even at the end of life when the therapeutic goal changes to that of comfort care.
Remember, knowledge is power. Find out everything you can about your disease and treatment options, evaluate your strengths and weaknesses, identify the areas in which you need support, and go for it! You will probably have to redefine your goals, at least in the short term, and make compromises in order to get through therapy. But, in partnership with your medical team, you can do it.
It is said that people cope with cancer in much the same way they have dealt with previous crises. This is true-but it is also clear that we all have more resilience than we think, that we often surprise ourselves with how tough we can be. In our medical practice, we see this phenomenon every day-people drawing on hitherto untapped reserves of courage in their determination to prevail over their illness. This courage is buttressed and sustained by the love of family and friends and by participation in the all-important fifth dimension of cancer therapy.
Mark Twain said, Courage is resistance to fear, mastery of fear-not absence of fear. Mastery of fear is the challenge. Quality of life is the goal.
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- From Supportive Cancer Care
- by Ernest H. Rosenbaum, MD & Isadora R. Rosenbaum, MA
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