Key Points for This Section

Patients living with cancer need to make adjustments in their lives to cope with the disease and changes in treatment. Coping methods help patients adjust. Patients who are adjusting to the changes caused by cancer may have distress. The way each patient copes with cancer depends on many physical and emotional factors. Cancer patients need different coping skills at different points in time. Learning the diagnosis Being treated for cancer Finishing treatment Learning that the cancer has come back Becoming a cancer survivor

Patients living with cancer need to make adjustments in their lives to cope with the disease and changes in treatment.

Living with a diagnosis of cancer involves many life adjustments. Normal adjustment involves learning to cope with emotional distress and solve problems caused by having cancer. Patients with cancer do not make these adjustments all at once, but over a period of time as their disease and treatment change. Patients may need to make adjustments when they:

• Learn the diagnosis.

• Are being treated for cancer.

• Finish treatment.

• Learn that the cancer is in remission.

• Learn that the cancer has come back.

• Become a cancer survivor.

Coping methods help patients adjust.

Patients find it easier to adjust if they can carry on with their usual routines and work, keep doing activities that matter to them, and cope with the stress in their lives.

Coping is the use of thoughts and behaviors to adjust to life situations. The way people cope is usually linked to their personality traits (such as whether they usually expect the best or worst, or are shy or outgoing).

Coping methods include the use of thoughts and behaviors in special situations. For example, changing a daily routine or work schedule to manage the side effects of cancer treatment is a coping method. Using coping methods can help a patient deal with certain problems, emotional distress, and cancer in his or her daily life.

Patients who adjust well are usually very involved in coping with cancer. They also continue to find meaning and importance in their lives. Patients who do not adjust well may withdraw from relationships or situations and feel hopeless. Studies are being done to find out how different types of coping methods affect the quality of life for cancer survivors.

Patients who are adjusting to the changes caused by cancer may have distress.

Distress can occur when patients feel they are unable to manage or control changes caused by cancer. Patients with the same diagnosis or treatment can have very different levels of distress. Patients have less distress when they feel the demands of the diagnosis and treatment are low or the amount of support they get is high. For example, a health care professional can help the patient adjust to the side effects of chemotherapy by giving medicine for nausea.

The way each patient copes with cancer depends on many physical and emotional factors.

The following factors affect how a patient copes with the stress of cancer:

• The type of cancer, cancer stage, and chance of recovery.

• Whether the patient is newly diagnosed, being treated, in remission, or having a recurrence.

• The patient's age.

• Whether the patient is able to get treatment.

• How well the patient usually copes with stress.

• The number of stressful life events the patient has had in the last year, such as starting a new job or moving.

• Whether the patient gets support from friends and family.

• Social pressures caused by other people's beliefs and fears about cancer.

Cancer patients need different coping skills at different points in time.

The coping skills needed will change at important points in time. These include the following:

Learning the diagnosis

The process of adjusting to cancer begins before learning the diagnosis. Patients may feel worried and afraid when they have unexplained symptoms or are having tests done to find out if they have cancer.

A diagnosis of cancer can cause expected and normal emotional distress. Some patients may not believe it and ask, "Are you sure you have the right test results?" They may feel numb or in shock, or as if "This can't be happening to me". Many patients wonder, "Could I die from this?"

Many patients feel they are not able to think clearly and may not understand or remember important information that the doctor gives them about the diagnosis and treatment options. Patients should have a way to go over this information later. It helps to have someone with them at appointments, bring a tape recorder, or make a second appointment to ask the doctor questions and go over the treatment plan. See Talking with the Health Care Team ¹ in the PDQ summary on Communication in Cancer Care ² for more information.

As patients accept the diagnosis, they begin to feel symptoms of distress, including:

• Depression.

• Anxiety.

• Loss of appetite.

• Trouble sleeping.

• Not being able to focus.

• Trouble with the activities of daily life.

• Not being able to stop thinking about cancer or death.

When patients receive and understand information about cancer and their treatment options, they may begin to feel more hopeful. Over time, by using ways to cope that have worked in the past and learning new ways to cope, patients usually adjust to having cancer. Extra professional help to deal with problems such as fatigue, trouble sleeping, and depression can be helpful during this time.

Being treated for cancer

As patients go through treatment for cancer, they develop coping strategies to adjust to the stress of treatment. Patients may have anxiety or fears about:

• Procedures that may be painful.

• Side effects such as hair loss, nausea and vomiting, fatigue, or pain.

• Changes to daily routines at work or home.

Patients usually adjust well when they can compare short-term discomfort to long-term benefit (for example living longer) and decide, "It's worth it". Questions that patients may ask during treatment include, "Will I survive this?"; "Will they be able to remove all the cancer?"; or "What side effects will I have?". Finding ways to cope with problems caused by cancer such as feeling tired, getting to and from treatment, and changes in work schedule is helpful.

Finishing treatment

Finishing cancer treatment can cause mixed feelings. It may be a time of celebration and relief that treatment has ended. But it may also be a time of worry that the cancer could come back. Many patients are glad that treatment has ended but feel increased anxiety as they see their doctors less often. Other concerns include returning to work and family life and being very worried about any change in their health.

During remission, patients may become stressed before follow-up medical appointments because they worry that the cancer has come back. Waiting for test results can be very stressful.

Patients who are able to express both positive and negative emotions are more likely to adjust well. Patients are more able to cope with the emotional stress of finishing treatment and being in remission when they:

• Are honest about their emotions.

• Are aware of their own feelings and are able to share them with others.

• Are able to accept their feelings without thinking of them as right or wrong or good or bad and are willing to work through their emotions.

• Have support from others who are willing to listen and accept their feelings.

Learning that the cancer has come back

Sometimes cancer comes back and does not get better with treatment. The treatment plan then changes from one that is meant to cure the cancer to one that gives comfort and relieves symptoms. This may cause great anxiety for the patient. The patient may feel shock and be unable to believe it at first. This may be followed by a period of distress such as depression, trouble focusing, and being unable to stop thinking about death. Signs of normal adjustment include:

• Times of sadness and crying.

• Feelings of anger at God or other higher power.

• Times of pulling away from others and wanting to be alone.

• Thoughts of giving up.

Patients slowly adjust to the return of cancer. They stop expecting to be cured of cancer and begin a different kind of healing. This healing is a process of becoming whole again by changing one's life in many ways when faced with the possibility of death. It is very important that patients keep up hope while they adjust to the return of cancer. Some patients keep up hope through their spirituality or religious beliefs. (See the PDQ summary on Spirituality in Cancer Care ³ for more information.)

Becoming a cancer survivor

Patients adjust to finishing cancer treatment and being long-term cancer survivors over many years. As treatments for cancer have gotten better, cancer has become a chronic disease for some patients. Some common problems reported by cancer survivors as they face the future include:

• Feeling anxious that the cancer will come back.

• Feeling a loss of control.

• Reminders of chemotherapy (such as smells or sights) that cause anxiety and nausea.

• Symptoms of post-traumatic stress, such as being unable to stop thinking about cancer or its treatment or feeling separate from others and alone.

• Concerns about body image and sexuality.

Most patients adjust well and some even say that surviving cancer has given them a greater appreciation of life, helped them understand what is most important in their life, and stronger spiritual or religious beliefs.

Some patients may have more trouble adjusting because of medical problems, fewer friends and family members to give support, money problems, or mental health problems not related to the cancer.