Overview
When your treatment is completed, you may find yourself a bit unprepared for a return to "normal life." There are many secondary issues that can concern patients. Whether it is continued worry about whether the cancer will return, or a change in physical health or psychological well-being, most cancer survivors will face some challenges at the end of treatment.
Physical After Effects
You may have physical side effects from treatment that affect your life. Often, the severity of these side effects is related to the type of treatment you had, your age, your pre-cancer health state, and the presence of other diseases.
Children, in particular, may experience a variety of late term side effects. Some will arise even years after treatment, as the child grows and develops. Possible effects include concentration and memory problems, learning problems, early puberty, heart problems, lung damage, and kidney and bladder damage.
Ask your doctor what side effects are possible given the type of treatment you had. Knowing what to look out for in the future and what routine screening tests you should have to catch problems early can help to minimize their severity. Many cancer survivors also cope by taking an active role in maintaining their physical health through diet, exercise, stress reduction, and smoking cessation. Many report that by taking charge, they feel empowered and are able to improve their sense of self and of hope.
Fear of Recurrence
Fear of recurrence is a common and natural feeling. Sometimes, a doctor can say with confidence that the disease is completely gone. More often, a patient is given only an estimate of the chance of cure. Whether the estimate is high or low, the future may remain uncertain for some time. Fortunately, there are many stories of people who were told they had only a few months to live and were telling the tale years later. Gaining a sense of control and staying informed go a long way in coping with fears of recurrence.
Having survived cancer makes some patients hypervigilant in looking for any physical sign that the cancer has returned. They find themselves second-guessing any new feeling and worrying about every symptom. This is normal behavior, and should diminish with time. Your doctor or nurse will discuss with you the particular health issues that should concern you and will give you a schedule for follow-up visits. These visits will become less frequent over time.
Psychological After Effects
Your first reaction to completing treatment may be joy, but it also may be tempered by uncertainty, grief, sadness, or anger. Many cancer survivors report some level of distress following treatment, particularly if they have had other stressful life events or have had difficulties coping in the past. Uncertainty about relationships can be another source of concern. While family support can be critical in helping to address these emotions, survivors may worry about further imposing on already burdened family and friends. Leukemia survivors often seek psychological support through community agencies or healthcare professionals who specialize in cancer and survivor issues. See Resources for organizations that can help.
Anxiety and Depression
Anxiety and depression are not unusual in leukemia survivors. Your doctors and nurses can provide you with a better understanding of the emotional changes you may experience after treatment ends. Psychiatrists, psychologists, and social workers can also be very helpful in dealing with problems such as depression, panic attacks, feelings of isolation, and other feelings that concern you. Support groups, talking with family members, friends, and other cancer survivors, and listening to music or relaxation tapes all may help.
Body Image Concerns
The cancer experience may have an impact on your self-esteem and your body image. Physical changes such as hair loss, sallow skin tone, and weight loss or gain can leave you feeling like your "old self" is gone. These feelings are natural; you will probably feel much better in coming months, as your health, appetite, and energy return to normal.
Family Disruption
A diagnosis of leukemia often disrupts normal family relationships and responsibilities. Traditional roles may be reversed or additional roles taken on, causing stress for everyone. Returning to old roles and routines may take time. Open communication and a sense of humor help. As with other cancer-related difficulties, professional counselors can help families work through these problems.
Heightened Sense of Vulnerability
Almost everyone feels a heightened sense of uncertainty and vulnerability after cancer. But many patients say the experience makes them appreciate all the little things they never had time for before. After cancer, they "stop to smell the flowers."
Social Isolation
The cancer experience causes some patients to feel isolated or to withdraw from social interactions. Sometimes, social supports disappear or are unable to provide the kind of help a patient needs or wants. Sometimes, patients refuse support. Turn to your healthcare professionals for advice.
Put the Illness in its Place
For many patients, months or years of treatment have conditioned them to a "sick role." They may have felt ill and unable to carry on their usual activities. Now, at the end of treatment, they begin to feel better and can slowly resume normal activities. But leaving the "sick role" behind may take more than simply feeling better. Patterns develop, new behaviors have taken root, and anxiety and fear remain. The transition to the "well role" may take time.
Some people find it helps to take steps to "put the illness in its place." This idea, developed by staff at Memorial Sloan-Kettering, helps people to address the impact that cancer has had in their lives while also moving toward a more "normal" life. It involves several steps, outlined below. You may find it helpful to work through these with a counselor or a support group.
- Honor the illness. Acknowledge all the emotions that leukemia has raised in you and your family. Don't hide from your emotions, whatever they may be. Think about how your life has changed and what you have learned as a result of this experience.
- Re-establish your family life. Take some time to examine how the disease changed your family and personal routines and activities. What favorite activities were pushed aside during treatment? Take steps to reinstate those you most enjoyed, whether it is a family outing to a ball game or a potluck dinner with friends. Look around your home for anything that could serve as a reminder of the illness and decide if you want to put it out of sight. Help your children to reestablish the routines and activities they shared with their friends.
- Break the silence. Make sure all family members feel able to talk about the illness and how it affected them.
