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Distress During Cancer Care: NCCN Guidelines for Patients

September 7, 2022 - read ≈ 9 min

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The NCCN Guidelines for Patients were developed by the National Comprehensive Cancer Network (NCCN). NCCN is an organization that unites leading cancer care centers in the United States of America. Its activities are focused on scientific research, treatment and education of patients.

About distress

Everyone with cancer has some distress at some point in time. Distress is normal. Read this chapter to learn about the symptoms of distress and when distress is likely to occur.

Distress symptoms

Distress is an unpleasant experience of a mental, physical, social, or spiritual nature. It can affect the way you think, feel, or act. Distress is normal during cancer care, but it may make it harder to cope with cancer.

Distress ranges from mild to extreme levels. It can consist of common feelings like sadness, fear, and helplessness. Higher levels of distress can cause problems in one or more areas of life. It can affect a person’s self-care, social life, mood, or faith.

Everyone with cancer has some distress at some point in time. It is normal to feel sad, fearful, and helpless. Distress is to be expected.

There are many symptoms of distress. Distress symptoms differ between people. They can change over time. Some symptoms of distress are listed in Guide 1.

Guide 1. Examples of distress symptoms

• Sadness
• Fear, worry, helplessness
• Anger, feeling out of control
• Concerns about illness and treatment
• Worries about paying bills and costs of living
• Questioning your faith, your purpose, the meaning of life
• Pulling away from too many people
• Concerns about taking care of others, such as a child or parent
• Poor sleep, appetite, or concentration
• Depression, anxiety, panic
• Frequent thoughts of illness or death

Some symptoms of distress have other causes, too. An example is poor sleep. Poor sleep may be related to one or more factors, such as pain, heartburn, and medication.

You just can’t imagine how much fear and anxiety builds up.

– Dan
Survivor, Non-Small Cell Lung Cancer

Causes and risk factors

There isn’tjustone cause of distress. The cause of distress differs between people. For example, some people may be distressed from having severe side effects from treatment. Other people may be distressed from the amount of money needed to pay their bills. Even if you have been wise with your money,the costs related to cancer can add up.

Anyone can become distressed, but some people are more likely to than others. A risk factor is anything that increases the chance of an event. There is a wide range of risk factors for distress. Some of these risk factors are listed in Guide 2.

Guide 2. Risk factors for distress.
Distress is more likely in people who:

• Have uncontrolled symptoms
• Have a severe illness in addition to cancer
• Have cognitive impairment
• Have a cancer that is linked to depression
• Have limited access to health care
• Have money problems
• Are younger in age
• Have spiritual or religious concerns
• Are unable to communicate as needed
• Have family conflicts
• Lack social support
• Live alone
• Live in a new country (immigration)
• Don’t have a stable place to live
• Have younger or dependent children
• Have suffered trauma like physical or sexual abuse
• Have attempted suicide
• Have had a substance use disorder or are currently misusing alcohol or drugs
• Have had a mental disorder like major depression or generalized anxiety disorder

Health-related factors

People with uncontrolled symptoms are more likely to be distressed. Some people have symptoms from the cancer, from the cancer treatment, or both. If symptoms are severe or long-lasting, the chance of becoming distressed increases.

Certain medical conditions can lead to distress. An example is having cancer and another severe illness. Having cognitive impairment, like poor memory, may make dealing with cancer very hard. Another example is the link between depression and some cancers, such as pancreatic and head and neck cancers.

Access to care

Having limited access to health care can also lead to distress. Some people may not have health insurance or not enough insurance. Others may need to travel far to see a health provider. Some people have a hard time finding a health provider who meets their needs.

Financial factors

Money may get even tighter during cancer care. There may be less money due to travel costs, insurance co-payments, and missing work. With less money, the chance of becoming distressed increases.

Personal factors

Personal risk factors for distress include being young. Younger people may be very shocked to learn that they have cancer. It may be too much to deal with cancer and everyday life.

Some people have concerns related to their religious faith or spirituality. Their concerns may be long-standing or new. These concerns put people at risk for being distressed.

Social factors

Distress is more likely when there are problems with communication. Health providers may use words that their patients don’t know. Some people with cancer have trouble expressing their needs. Contacting health providers may not be easy.

Family conflict, lack of support, or living alone may increase the burden of having cancer. Unstable housing or the challenges of immigration may add to stress.

Children are an important responsibility. Caring for children while dealing with cancer can be very hard. People with cancer who care for children are more likely to be distressed.

Mental health factors

Poor mental health before cancer is linked to distress after cancer. Past trauma can affect mental well-being. It increases the risk for distress during cancer care. Trauma includes physical, sexual, verbal, or emotional abuse.

A past suicide attempt is linked to distress among people with cancer. Suicide can stem from deep feelings of hopelessness. These feelings may resurface during cancer care.

People who have had a mental health disorder (or mental illness) are more likely to be distressed during cancer care. Common mental health disorders include substance use disorders, mood disorders, and anxiety disorders.

  • Substance use disorders are defined by problems caused by the use of alcohol or drugs.
  • Symptoms of mood disorders are depression, mania, or both.
  • Symptoms of anxiety disorders are ongoing and intense worry, fear, or panic.

On a daily basis, I come across patients who are being absolutely drained of the resources they need.

– Dr. Fahd
Oncologist

Triggers

Distress can occur at any point in time. However, there are times when being distressed is more likely.
Guide 3 includes a list of times when distress is more likely.

Guide 3. Triggers of distress
Distress is likely to start or worsen when:

• A new symptom prompts testing
• Being tested for cancer
• Learning the diagnosis
• Learning the cancer is advanced
• Learning you have a genetic risk for cancer
• Waiting for treatment to start
• Symptoms get worse
• Having a treatment-related complication
• Being admitted to or discharged from a hospital
• Starting another type of treatment
• Learning that treatment didn’t work
• Finishing treatment
• Receiving follow-up care and cancer tests
• Learning the cancer returned or worsened
• Starting end-of-life care

Testing

You may become distressed when getting tested. An example is being distressed when getting tests for a symptom or lump. After getting tested, you may need to wait for the results. Waiting for test results can be hard.

The first response to learning of a cancer diagnosis is often shock. You may also be worried, fearful, or sad. Further testing may be needed to learn more about the cancer you have.

When cancer appears cured or well-controlled, people get tests on a regular basis. Going to check-up visits and waiting for test results can be stressful. Distress is common if the cancer returns or worsens.

Treatment

Waiting for treatment to start can trigger distress. Cancer treatment may cause distressing health problems (that is, complications and side effects). Distress is also common after learning that treatment didn’twork.

Transitions in care

Transitions in care can also lead to distress. Examples of a transition include being discharged from the hospital or finishing all treatment. Shifting from frequent treatment visits to less frequent follow-up visits is a big change.

Impact on life

In this section, some of the negative effects of distress are described. These negative effects show why distress screening and treatment are so important.

By definition, being distressed isn’t pleasant. Feeling distressed doesn’t make coping with cancer any easier. You are stressed enough with learning about cancer, getting cancer care, and doing your everyday duties.

Distress may affect how well you function. Distress can interfere with sleep. You might sleep less or more than normal. Distress may lessen your ability to focus. You may need to ask people to repeat what they said because you lost track. Distress may affect how well you relate to people. You may pull away from others. If you have children, you may have trouble taking care of them.

Distress may interfere with your health decisions or actions. People who are distressed are less likely to take their medicines as their doctor prescribed. They may also have trouble making treatment decisions and be less likely to exercise and quit smoking.

Distressed people are also less likely to go to follow-up visits. This can lead to health problems followed by even more visits to the doctor’s office and emergency room.

Distress may worsen your health. Distress leads to poorer quality of life. It may even have a harmful impact on your length of life.

Poor mental health can further worsen from distress during cancer care. At high levels, distress can result in a mental health disorder.

Review

  • Distress is normal, common, andexpected. Common symptoms aresadness, fear, and helplessness.
  • Distress ranges from mild to extremelevels. Everyone with cancer has somelevel of distress at some point in time.
  • Some people are more likely to bedistressed than others. People who haveuncontrolled symptoms, money problems,lack of support, or a history of mentalillness are likely to be distressed.
  • There will be times when being distressedis more likely. A change in your health,treatment, or health providers can triggerdistress. Distress is common after learningthe cancer has returned or worsened.
  • Being distressed makes it harder to copewith cancer. It can limit how well youfunction. Distress can also lead to worsephysical and mental health

It’s hard to deal with all of the things that happen at once, and not to just collapse and worry and stress.

– Pauline
Wife of a Cancer Survivor


You can read more about Distress During Cancer Care, its treatment methods and follow-up after treatment in the full text of the recommendations for patients by downloading it below.

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