In June 1982, Harold Benjamin, Ph.D, founded The Wellness Community (TWC) now the Cancer Support Community (CSC) in Santa Monica, California. At the center of CSC's program philosophy is Dr. Benjamin's Patient Active Concept that states that, "People with cancer who participate in their fight for recovery from cancer will improve the quality of their life and may enhance the possibility of their recovery." A person who sees him or herself as a "Patient Active" is someone who considers themselves part of the fight for recovery along with their physicians and health care team. A Patient Active also adopts a series of actions, behaviors and attitudes that will improve the quality of his or her life and may enhance the possibility of recovery.
Being a "Patient Active" is about feeling and acting empowered. Patient Active is not just a descriptive term about how you choose to act during the cancer experience. A Patient Active is an actual person who opts for not just being a "cancer patient" - but rather a "cancer patient - active." It is your ACTIVE PARTICIPATION in the choices you and your healthcare team make about treatment that can improve your quality of life and perhaps enhance the possibility of your recovery. Choosing to be a Patient Active is not one monumental decision, but rather a series of small, incremental choices that help you regain a sense of control over your treatment and in your life in general.
There is no right or wrong way to be a Patient Active. You decide what is best for you. Being a Patient Active means that you take specific steps to learn to make informed decisions about your cancer and its treatment as well as the psychological, emotional, social and spiritual issues that impact your health and well being.
Among the many stressors that cancer and its treatment can bring, research has shown that there are three particularly challenging psychological and emotional stressors that people with cancer face namely-unwanted aloneness, loss of control and loss of hope. A meaningful way to reduce these stressors is to participate-along with loved ones and other people with cancer-in support groups, educational workshops, stress management programs and other activities such as those offered at The Cancer Support Community.
The following statement reflects a core part of the Patient Active Concept and a firm belief by those associated with The Cancer Support Community: "Combining the will of the patient with the skill of the physician - a powerful combination in the fight against the common enemy - cancer!" - Harold Benjamin
CSC’s Ten Core Principles from Patient Active to Life Active
• Patient Active Concept
• Home-like Setting
• All Cancers
• Adjunctive to Conventional Medical Treatment
• Committed to Quality Assurance
• Signature Cancer Educational Programs
Keys to being Patient Active
Take a deep breath. When you feel stressed or overwhelmed by choices, take a moment, breathe, and simply make one decision at a time. Begin by getting the information and resources that you need for the next phase of your treatment plan. Avoid projecting worst-case scenarios for the future. Take one positive step toward tomorrow
Ask for support. Be open with your family and friends about how they can support you. Often people want to help, but don’t know how. Offer them specific examples, such as driving you to appointments or preparing meals. Take an advocate with you to medical appointments to take notes, remember instructions and discuss what you heard afterwards.
Communicate with your health care team.
Prepare a list of questions for each appointment. Ask for clarification of terms you do not understand. Ask to see x-rays or scans to get a better picture of your status. If you do not develop a good relationship with your doctor, consider finding another one. Also, always consider a second opinion on your diagnosis and treatment plan.
Participate in social activities and hobbies that you enjoyed before your diagnosis. Stay involved with friends, but give yourself opportunities to spend time alone when you need it.
Develop a plan with your doctors and caregivers that gives you as much control over your life as you can realistically handle. This plan should coordinate medical and psychosocial care to support you in managing your illness and health by linking you with needed services for emotional, practical and spiritual support.?Express your feelings, both positive and negative, in talking to your doctor, caregivers, and friends. A diagnosis of cancer can trigger many strong emotions, but you can find constructive ways to acknowledge the range of feelings that you may experience. Try using a journal to track your moods. Another good way to vent your frustration or fears is through physical activity like walking or yoga. Ask your doctor for resources to address any depression or anxiety that you may experience. This is normal and you do not have suffer with depression and anxiety.
Seek relaxation Cancer is stressful. It helps to learn how to trigger a relaxation response in times of stress. The relaxation response is a calm, controlled physical state that may enhance the function of your immune system for a period of time by reducing stress. Consider joining a relaxation or meditation program in your community or engage in activities that enable you to relax, such as walking, reading, or listening to music.
View yourself as a survivor, not as a victim. The National Association of Cancer Survivorship (NCCS) states that you are a cancer survivor from the moment of diagnosis. There are millions of people for whom cancer is a distant memory. Use positive terms, like wellness, hope, and control to counteract any feelings of passivity, pessimism, or guilt. Don’t blame yourself. Focus on what you can do and control in your life now. Cancer is not an automatic death sentence and the treatments have changed dramatically from even a few short years ago. There is always hope.
Seek support from other cancer survivors. You may find a sense of comfort in communicating with others who share your experiences, either in person, online, or on the telephone. Ask your doctor, nurse, social worker, or counselor for suggestions. Contact The Cancer Support Community or the organizations listed in the Resources on this website for ways to connect with other cancer survivors.
Maintain a spirit of hope Many people have survived cancer, and you can, too. Draw on your spiritual beliefs, cultural customs, and family connections. Talk with other survivors to learn from their experiences. Hope is a motivating factor in your recovery. A positive perspective will help you handle any challenges that lie ahead. Remember that cancer is only a part of your life. You may have cancer but it does not have you!