Metastatic Breast Cancer as Life Experience
Diane W. Scott, RN, PhD, FAAN
Recurrence. Metastasis. Relapse. Words to describe what may happen to every one diagnosed with breast cancer, and does to between 10 and 30 percent. For 8 to 24 percent of all, reoccurrence of breast cancer in some location will appear within two years of diagnosis. In the remaining 2 to 6 percent, it will occur sometime after the two-year point. The more aggressive the cell, the larger the tumor, the presence of cancer-positive axillary nodes at the time of surgery, a diagnosis of inflammatory breast cancer or Her 2-neu positivity are biologic indicators of higher risk for reoccurrence.
Reoccurrence means that breast cancer cells are found in some location in the body generally after treatment for the initial diagnosis has concluded and when no evidence of disease has been the case for a period of time. On biopsy, these cells are found to be the same cancer cells that were found on original diagnosis. If they are not, they may be considered a different primary cancer rather than a spread of the original cancer and as such, a new disease.
Metastasis may be local, regional or distant. Local mets are located in the originally-diagnosed breast or the contralateral or opposite breast. Local mets may be in the same or different location than was the original site. Regional mets include the lymph nodes around the breasts (Mammary), lungs (Hilar), and those nodes running in a chain from the armpit, up along the clavicle or collar bone and on up into the neck. Distant mets involve organs that are favorable to breast cancer cell colonization: Bone, Liver, Lung and less often Brain. Distant metastases can compromise survival because they ultimately interfere with the function of vital organs. Overall, if breast cancer is detected early and is treated properly, the majority diagnosed will live out a normal life span. Similarly, if metastasis is discovered early, there is a very good chance that appropriate treatment will place the disease in remission again.
For those who have metastatic disease, life becomes very complex. No matter how many supportive people are around, metastatic disease is a lonely experience. Emotions felt in the first newly-diagnosed, active treatment phase of recovery, are felt again but more intensely. Fear, Anxiety, Anger, Depression. Remaining hopeful, fighting feelings of helplessness, becomes a full- time job, no matter how many diversions life offers
The reality is that breast cancer is a chronic disease that may go in and out of remission over time. The aim of medicine at present is not cure, but permanent and complete remission, or the disappearance of any diagnostic sign of disease. Following medical treatment, two powerful natural forces within the body assist to maintain remission. The Immune System and the capacity for slow Repair of DNA and mutated genes. In the first six months following the end of cancer treatment, a subdivision of T-lymphocytes (antibodies) called Natural Killer Cells will proliferate. These immune cell are designed to patrol the blood and lymph systems, on the lookout for cancer cells. Their job is to track, find, lock onto and kill cancer cells. This process can be augmented by stress management aimed at reducing cortisol (the body's adrenaline) levels. Ultimately, the number and quality of NK cells produced is enhanced as stress hormones and neurotransmitters are decreased.
There is some evidence that DNA has the capacity to repair itself. Since cancer is generated by mutated genes that cause faulty protein production and thus abnormal or malignant tumors to develop, this process is an important aspect of the disease. DNA repair takes much longer than antibody mobilization, some scientists think that the repair process can be enhanced by acquiring harmony within. The membrane on the outside of the cell contains as many as 1000 receptors which communicate information from the atmosphere outside the cell to the inside of the cell. When the signals communicated are harmonious, repair and normal restoration may take place in DNA, located inside the cell. There are many complementary therapies available that may help to establish harmony. Scientific research testing several of these therapies is underway, but will take a long time. However, any effort that orders and organizes the environment, increases creative endeavor and establishes beauty in one's life will help to increase the harmony within. A cancer diagnosis gives permission to take life in hand and improve its quality.
- When you actively take charge of your life, its quality improves, and so may your chances for survival. The diagnosis of metastatic disease is a signal that you must go to work again and begin taking steps to increase your feelings of control and well-being, and to enhance your chances for survival.
- First, find out the exact nature of the metastasis. Request a talking appointment with your medical oncologist and either tape the session or ask someone close to you (spouse, good friend, adult child, other family member, etc.) to accompany you to the appointment and take notes. Go over scans, pathology reports and blood assays with the physician so that you get a good sense of what is happening in your body, Discuss treatment options and the oncologist's recommended treatment plan. If you are still in doubt, make an appointment for a second opinion with another cancer specialist outside of your own oncologist's health care system.
Second, your life and your health now become your first priority. You will need to give full attention to this 'new job' ahead. Most treatment programs are rigorous and may require time off from work or a protracted period away from the job. See your employer and human resources person to find out about your options.
Third, gather a support system around you. Quality is more important than quantity. Be reasonable about your expectations for support. Not every person can provide all three of the essentials of support. Assistance, Affection and Affirmation. Some friends can lend a helping hand but cannot provide the couch or the ear that are often needed. Others can be there as good listeners, helping you to feel as if you can get through the crisis. Support groups are a good way to bolster your support system. The group should never tire of the issues that breast cancer brings to the fore. A good group is a reliable place to get information and share resources, a place where every one can safely express feelings and emotions and can be an outlet for the pain and anguish that may otherwise be borne alone.
Fourth, actively participate in your treatment. Take steps to make it as comfortable as possible. Establish a good relationship with the person who will administer your treatment. Work with that individual to manage nausea, be assured that treatment is given correctly and safely, be kept up-to-date on your progress and response to treatment and be allowed privacy and comfort during the often prolonged time of treatment administration. While you are receiving treatment, take time to do relaxation exercises and visualization. The easiest way to invoke harmony within; during this time is to listen to a relaxation or imagery tape recording. Provide yourself with a free time for between 48 and 72 hours following treatment, when you rest, continue taking anti-nausea medication, and pamper yourself. One of the most prevalent side effects of treatment is fatigue. During this time, your body will do the natural thing to help you to survive. It will reroute your energy inward to cooperate with the many changes occurring with the treatment. You will experience this as fatigue. Allow yourself to lean into the feeling through rest, sleep, relaxation and imagery, yoga, any techniques that allow you and your body to come first. Having a massage following treatment is another good way to establish the flow and the harmony within Current research findings point to exercise, as tolerated between cycles of treatment, as an effective way to reduce nausea, fatigue and other side effects.
Fifth, take on the crisis of metastasis in manageable doses. A diagnosis of metastases is an overwhelming occurrence. No matter how well-informed and prepared you are for its possibility, reoccurrence is a shock. Be gentle with yourself. Try to off-set the crisis. Take it on in manageable doses. Take one thing at a time. Later on, you will be able to do more things, but initially, take what you have to do in a step-by-step fashion. This might be a good time to find a therapist or counselor who specializes in oncology or working with cancer patients, someone who understands the disease, its treatment and the emotional cost of the total experience can be a powerful ally. A short course of antidepressant or anti-anxiety medication may not only reduce the emotional pain, but may allow for an improved and more focused response to cancer treatment. Although this type of therapy may not be right at the moment, remember that it is available if needed later on.
Stress management and creating the harmony within are essential to the recovery process. Counseling may help you to develop new skills in relating to family, friends and co-workers, resolving old problems and issues that resurface, learning to set healthy boundaries, coming in touch with your spirit and your spirituality, and learning new ways of expression through journal-writing, meditation and other means of probing who you really are and what you are all about.
Strangely, the metastatic cancer experience provides advantages that life may not have offered otherwise. It bestows a wisdom that most people would not have gained until old age. The central issues of having metastatic disease are deep ones. Loneliness and isolation, exhaustion, living with uncertainty and, most important, finding new meaning and purpose in life. Take full advantage of this time, learn to submit and lean into things like fatigue, allow yourself to be number one, come toe-to-toe with your anger and fear, learn how to re-channel emotional energy to your benefit.
There is a significant possibility that your disease will then go into a partial or complete remission, or might stabilize with treatment. By working towards that end, you will be stronger and more skillful in any other challenge that might lie ahead. Streamline your life and make it organized and efficient, including getting your affairs in order. Everyone should.
Honor yourself and your life. Begin today.
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