Anxiety and distress can affect the quality of life of patients with cancer and their families.

Patients living with cancer feel many different emotions, including anxiety and distress.

• Anxiety is unease, fear, and dread caused by stress.
• Distress is emotional, mental, social, or spiritual suffering. Patients who are distressed may have a range of feelings, from sadness and a loss of control to depression, anxiety, panic, and isolation.

Patients may have anxiety and distress when:

• Being screened for cancer.
• Waiting for test results.
• Hearing a cancer diagnosis.
• Being treated for cancer.
• Worrying that cancer will recur (come back).

Anxiety and distress may cause problems such as nausea and vomiting before each treatment, having more pain than usual, and sleeplessness. Patients may decide to delay cancer treatment or miss check-ups when they feel anxiety and distress.

Even mild anxiety can affect the quality of life for cancer patients and their families and may need to be treated.

Patients with cancer have different levels of distress.

Some patients with cancer have a low level of distress, and others have higher levels of distress. The level of distress ranges from being able to adjust to living with cancer to having a serious mental health problem, such as major depression.

This summary describes the less severe levels of distress in adults with cancer, including the following:

• Normal adjustment—A condition in which a person makes changes in his or her life to manage a stressful event such as a cancer diagnosis. In normal adjustment, a person learns to cope well with emotional distress and solve problems related to cancer.
• Psychological and social distress—A condition in which a person has some trouble making changes in their life to manage a stressful event such as a cancer diagnosis. The feelings of distress may range from normal feelings of vulnerability and sadness to feelings that affect quality of life, such as depression, panic, and spiritual crisis. Help from a professional to learn new coping skills may be needed.
• Adjustment disorder—A condition in which a person has a lot of trouble making changes in his or her life to manage a stressful event such as a cancer diagnosis. Symptoms such as depression, anxiety, or other emotional, social, or behavioral problems occur and worsen the person's quality of life. Medicine and help from a professional to manage these symptoms may be needed.
• Anxiety disorder—A condition in which a person has severe anxiety. It may be because of a stressful event like a cancer diagnosis or for no known reason. Symptoms of anxiety disorder include extreme worry, fear, and dread. When the symptoms are severe, it affects a person's ability to lead a normal life. There are many types of anxiety disorders, including the following:
  • Generalized anxiety disorder.
  • Panic disorder (a condition that causes sudden feelings of panic).
  • Agoraphobia (fear of open places or situations in which it might be hard to get help if needed).
  • Social anxiety disorder (fear of social situations).
  • Specific phobia (fear of a specific object or situation).
  • Obsessive-compulsive disorder.
  • Post-traumatic stress disorder.

There are certain risk factors for high levels of distress in people with cancer.

Nearly half of cancer patients report having a lot of distress. Patients with lung, pancreatic, and brain cancers may be more likely to report distress, but in general, the type of cancer does not make a difference. Factors that increase the risk of anxiety and distress are not always related to the cancer.

The following are risk factors for high levels of distress in patients with cancer:

• Trouble doing the usual activities of daily living.
• Physical problems and side effects of treatment (such as fatigue, nausea, or pain).
• Problems at home.
• Unmet social and spiritual needs.
• Depression, cancer-related post-traumatic stress, or other emotional problems.
• Being younger, female, or nonwhite.
• Having a lower level of education.

Patients who have a high level of distress when they are diagnosed with cancer are more likely to have continued high levels of distress after their diagnosis.

Screening is done to find out if the patient needs help adjusting to cancer.

Screening is usually done by asking the patient questions about how they feel, their energy level, relationships, work, and finances. Patients who show a medium to high level of distress may be referred to a social worker, mental health professional, palliative care specialist, or pastoral counselor for further evaluation and therapy.

Each patient will cope in different ways.

The way patients cope is usually linked to their personality traits (such as whether they usually expect the best versus the worst, or if they are shy versus outgoing).

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. Patients who adjust well to coping with cancer continue to find meaning and importance in their lives. Patients who do not adjust well may withdraw from relationships or situations and feel hopeless.

Patients who are having trouble coping with cancer may find it helpful to talk with a professional about their concerns and worries. These specialists may include the following:

• Mental health professionals, including psychologists and psychiatrists.
• Social workers.
• Palliative care specialists.
• Religious counselors.

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 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.

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

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.

The coping skills needed will change at different points in a patient’s cancer journey. These include the following:

• Hearing the diagnosis.
• Being treated for cancer.
• Finishing cancer treatment.
• Learning that the cancer is in remission.
• Learning that the cancer has come back.
• Deciding to stop cancer treatment.
• Becoming a cancer survivor.

Hearing the diagnosis

The process of adjusting to cancer begins before patients hear 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 patients to have more distress when their fears become true. It may be difficult for patients to understand what the doctors are telling them during this time.

Additional help from health professionals for problems such as fatigue, trouble sleeping, and depression may be needed during this time.

Being treated for cancer

As patients go through cancer treatment, they use coping skills (also known as coping strategies) to adjust to the stress of treatment.

Coping skills can help patients with certain problems, emotional distress, and cancer by using thoughts and behaviors to adjust to life situations. For example, changing a daily routine or work schedule to manage the side effects of cancer treatment is a coping skill.

Remission after treatment

Patients may be glad that treatment has ended but feel increased anxiety as they see their treatment team less often. Other concerns include returning to work and family life and being worried about any change in their health.

Many patients will feel increased distress after finishing treatment, but this usually does not last long and may go away within a few weeks.

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

Learning that the cancer has come back

Cancer that comes back after treatment may cause an increase in distress from having:

• A return of symptoms.
• A sense of hopelessness.
• A negative view of the cancer.

The patient's quality of life may be improved if they are able to manage their cancer and have support from friends and family.

Stopping cancer treatment

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 the patient to have an increase in anxiety or depression. See the PDQ summaries on Depression and Cancer-Related Post-traumatic Stress for more information.

Patients who adjust to the return of cancer often keep up hope in meaningful life activities. Some patients look to spirituality or religious beliefs to help keep up their quality of life.

Becoming a long-term cancer survivor

Patients adjust to finishing cancer treatment and being long-term cancer survivors over many years. Some common problems reported by cancer survivors as they face the future include the following:

• Feeling anxious that the cancer will come back.
• Feeling a loss of control.
• Having anxiety and nausea in response to reminders of chemotherapy (such as smells or sights).
• Having symptoms of post-traumatic stress, such as being unable to stop thinking about cancer or its treatment or feeling alone or separate from others.
• Feeling tired all of the time.
• Being concerned about body image and sexuality.

Regular exercise and individual or group counseling may help improve these problems and the patient's quality of life.

Most patients adjust well and some even say that surviving cancer has given them a greater appreciation for life, a better understanding of 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 who give support, money problems, or mental health problems not related to the cancer.

Feelings of physical, emotional, social, or spiritual distress can make it hard to cope with cancer treatment.

Almost all people living with cancer have feelings of distress. Feelings of distress range from sadness and fears to more serious problems such as depression, anxiety, panic, feeling uncertain about spiritual beliefs, or feeling alone or separate from friends and family.

People who are in distress during any phase of cancer need treatment and support. People are more likely to need to be checked and treated for distress during the following periods:

• Soon after diagnosis.
• At the start of treatment.
• At the end of treatment.
• During remission.
• If the cancer comes back.
• If the goal of treatment changes from curing or controlling cancer to palliative therapy to relieve symptoms and improve quality of life.

People who are in distress can be helped by different kinds of emotional and social support.

Studies have shown that people who are having trouble adjusting to cancer are helped by treatments that give them emotional and social support, including the following:

• Relaxation training.
• Counseling or talk therapy.
• Cancer education sessions.
• Existential therapy (focuses on the human condition, including what humans are capable of, as well as their limitations).
• Social support in a group setting.

Benefits from these therapies include having lower levels of depression, anxiety, and cancer- and treatment-related symptoms, as well as feeling more hopeful. People who have the most distress seem to get the most relief from these therapies.

Adjustment disorders may cause serious problems in daily life.

An adjustment disorder occurs when the patient's reaction to a stressful event:

• Is more severe than the expected amount of distress.
• Affects relationships or causes problems at home or work.
• Includes symptoms of depression and anxiety or other emotional, social, or behavioral problems.

Stressful events for cancer patients include diagnosis, treatment, cancer recurrence, and when side effects occur. Patients who have trouble coping with these events may develop an adjustment order. An adjustment disorder usually begins within 3 months of a stressful event.

Counseling and other activities can help patients with adjustment disorders.

Individual (one-to-one) and group counseling have been shown to help cancer patients with adjustment disorders. Counseling may include treatment that focuses on the patient's thoughts, feelings, and behaviors.

The following may help patients cope:

• Relaxation training.
• Cognitive behavior therapy.
• Problem-solving.
• Support from friends and family.
• Meditation.
• Yoga.
• Mental imagery exercises.
• Hypnosis.
• Positive thoughts about coping.
• Breathing exercises.

Counseling may be combined with antianxiety or antidepressant medicine.

Counseling should be tried before medicine. Some patients are not helped by counseling or have a mental health problem, such as severe anxiety or major depression. These patients may be helped by an antianxiety or antidepressant medicine along with counseling.

Anxiety disorders are strong fears that may be caused by physical or psychological stress.

Studies show that almost half of all people with cancer say they feel some anxiety and about one-fourth of all people with cancer say they feel a great deal of anxiety. A person may become more anxious as cancer spreads or treatment becomes more aggressive. This is especially true for people who had an anxiety disorder before their cancer diagnosis.

For some people, anxiety may feel like it is more than they can handle and this may affect their cancer treatment.

Symptoms of anxiety disorders include the following:

• Shortness of breath.
• Fast heartbeat.
• Sweating.
• Restlessness.
• Muscle tightness.
• Feeling faint or dizzy.
• Feeling nauseated.
• Feeling irritable.
• Being afraid they are having a heart attack.
• Being afraid they are “going crazy”.

People are more likely to have anxiety disorders during cancer treatment if they have any of the following:

• A history of an anxiety disorder.
• A history of physical or emotional trauma.
• Anxiety at the time of diagnosis.
• Few family members or friends to give them support.
• Severe pain or other physical symptoms that are not controlled well.
• Cancer that is not getting better with treatment.
• Trouble taking care of their personal needs such as bathing or eating.

Anxiety disorders affect a person’s quality of life.

An anxiety disorder diagnosis is based on how symptoms of anxiety affect the person's quality of life, what kinds of symptoms began since the cancer diagnosis or treatment, when the symptoms occur, and how long they last.

Anxiety disorders cause serious symptoms that affect day-to-day life, including the following:

• Feeling worried all the time.
• Not being able to learn new information.
• Not being able to "turn off thoughts" most of the time.
• Trouble sleeping most nights.
• Frequent crying spells.
• Feeling afraid most of the time.
• Having symptoms such as fast heartbeat, dry mouth, shaky hands, restlessness, or feeling on edge.
• Anxiety that is not relieved by distraction by staying busy.

There are different causes of anxiety disorders in people with cancer.

In addition to anxiety caused by a cancer diagnosis, the following may cause an anxiety disorder in people with cancer:

• Pain: People whose pain is not well controlled with medicine feel anxious, and anxiety can increase pain.
• Other medical problems: Sepsis, a low blood oxygen level, heart failure, and electrolyte imbalances can also cause anxiety. Anxiety may be a warning sign of a change in metabolism (such as low blood sugar), a heart attack, severe infection, pneumonia, or a blood clot in the lung.
• Certain types of tumors: Certain tumors of the adrenal gland, pituitary gland, pancreas, or thyroid can cause symptoms of anxiety and panic attacks. Tumors that have spread to the brain and spinal cord and tumors in the lungs can also cause symptoms of anxiety.
• Taking certain drugs: Certain types of drugs, including corticosteroids, thyroxine, bronchodilators, and antihistamines, can cause restlessness, agitation, or anxiety.
• Withdrawing from habit-forming drugs: Withdrawal from alcohol, nicotine, opioids, or antidepressant medicine can cause agitation or anxiety.

Anxiety from these causes is usually managed by treating the cause of the anxiety.

A cancer diagnosis may cause anxiety disorders to come back in patients with a history of them.

When people who had an anxiety disorder in the past are diagnosed with cancer, the anxiety disorder may come back. These people may feel extreme fear, be unable to remember new information, or be unable to follow through with medical tests and procedures.

There are different types of anxiety disorders.

People who have intense fear, have trouble understanding information about their cancer, or are unable to cooperate with medical tests should be screened for the following types of anxiety disorders:

• Phobias. Phobias are fears about a situation or an object that lasts over time. People with phobias usually feel intense anxiety and avoid the situation or object they are afraid of. Phobias may make it hard for patients to follow through with tests and procedures or treatment. For example, people with a phobia of needle sticks may avoid having blood drawn for laboratory tests.
• Panic disorder. People with a panic disorder feel sudden intense anxiety, known as panic attacks. A panic attack usually lasts for 10 to 20 minutes, but the fear of having another panic attack may cause feelings of discomfort to continue for longer.
• Generalized anxiety disorder. People with a generalized anxiety disorder may feel extreme and constant anxiety or worry. A person who has generalized anxiety may feel irritable, restless, or dizzy, have tense muscles, shortness of breath, a fast heartbeat, sweating, or get tired quickly.
• Obsessive-compulsive disorder (OCD). OCD is diagnosed when a person uses persistent (obsessive) thoughts, ideas, or images and compulsions (repeated behaviors) to manage feelings of distress. The obsessions and compulsions affect the person's ability to work, go to school, or be in social situations. Examples of compulsions include frequent hand washing or constantly checking to make sure a door is locked.

  People with cancer who have OCD may be unable to follow through with treatment because of persistent thoughts and behaviors. They may also have obsessive thoughts about their cancer coming back. OCD is rare in people with cancer who did not have an anxiety disorder before being diagnosed with cancer.

• Health anxiety disorder. Cancer survivors may develop health anxiety disorder related to their fears about their cancer coming back. This may include being highly alert to any possible physical symptoms, extreme focus on their cancer status, and requesting medical tests and visits with their doctor more often or earlier than needed.
• Post-traumatic stress disorder. Post-traumatic stress can come from feelings of shock, fear, helplessness, and horror at the time of cancer diagnosis.

There are different kinds of treatment for anxiety disorders.

People with anxiety disorders need information and support to understand their cancer and treatment choices. Psychological treatments can also be helpful. These include the following:

• Individual (one-to-one) counseling.
• Couple and family counseling.
• Crisis counseling.
• Group therapy.
• Self-help groups.
• Cognitive behavior therapy.
• Relaxation training, such as hypnosis, meditation, guided imagery, or biofeedback.

Using different methods together may be helpful for some people. For more information, see the Psychological and Social Distress section.

Medicine may be used alone or combined with other types of treatment for anxiety disorders.

Antianxiety medicines may be used alone or combined with other psychological therapies. These medicines relieve symptoms of anxiety, such as feelings of fear, dread, uneasiness, and muscle tightness. They may relieve daytime distress and lessen trouble sleeping.

Studies show that antidepressants are useful in treating anxiety disorders. Children and teenagers being treated with antidepressants have an increased risk of thinking about suicide and must be watched closely.

Being diagnosed with cancer and going through intensive treatment is stressful. So, when treatment ends, family and friends are eager to celebrate. But many cancer survivors don’t feel like celebrating or don’t feel ready to move on with their lives.

One reason for this apparent disconnect is that “it can be scary to go from seeing [health care] providers and a medical team on a regular basis to not being seen as frequently,” said Suzanne Danhauer, Ph.D., a clinical psychologist at Wake Forest School of Medicine. As a result, Dr. Danhauer said, survivors’ distress levels often go up, often unexpectedly.

Fear that the cancer will come back, or recur, is another source of distress for many survivors. People often feel especially anxious when they’re due for a scan or other follow-up medical visit—a feeling that some cancer survivors have dubbed “scanxiety.”

“Scans are like revolving doors, emotional roulette wheels that spin us around for a few days and spit us out the other side,” wrote cancer survivor Bruce Feiler, in a June 2011 Time magazine article. “Land on red, we're in for another trip to Cancerland; land on black, we have a few more months of freedom.”

“Fear of recurrence is the most common emotional difficulty that people tell us they have after they’ve completed [cancer] treatment,” said Karen Syrjala, Ph.D., a clinical psychologist at the Fred Hutchinson Cancer Research Center in Seattle. And while a certain amount of anxiety is normal, for some survivors it can become debilitating, she said.

Studies have shown that anxiety and stress are common among long-term cancer survivors.
Credit: National Cancer Institute

Research shows that anxiety and distress are more common in long-term cancer survivors than in their healthy peers with no history of cancer. In addition to the fear of recurrence, other sources of cancer-related distress for survivors include concerns about family and finances, changes in body image and sexuality, and the challenges of managing their long-term health needs.

These cancer-specific types of distress “may not fall into the classic description of anxiety or depression but are still disruptive to [a person’s] quality of life,” Dr. Syrjala said.

Numerous approaches have been shown to help cancer patients and survivors cope with cancer-related anxiety and distress. However, many studies of these methods have been done in large cancer centers, and one challenge that remains is how to implement existing approaches in real-world settings, such as community oncology or primary care practices, said Deborah Mayer, Ph.D., R.N., interim director of NCI’s Office of Cancer Survivorship.

Another limitation, Dr. Mayer said, is that many studies of approaches to help survivors cope with anxiety and distress, as well as with depression, have focused only on women who are breast cancer survivors. “We need to study people with other types of cancers as well,” she said.

Studies supported by NCI and others, however, are exploring new ways to support the psychological and emotional health needs of a diverse range of cancer survivors and how to tailor existing approaches to meet the needs of specific individuals or groups.

As the number of long-term cancer survivors continues to grow, oncologists and other providers who care for survivors have become more aware that their patients are at increased risk of anxiety and distress.

“Cancer survivors need the expertise of someone who knows cancer and understands what is ‘normal’ for a cancer survivor,” Dr. Syrjala said. It’s important to reassure survivors that some degree of anxiety and distress is very much normal and won’t increase their risk of dying or cause the cancer to come back, she added.

“And that’s a starting point for being able to say, ‘How do we then move on to help you manage [those feelings]?’”

Approaches that have been shown to be helpful for managing anxiety and distress in cancer survivors include a type of psychotherapy called cognitive behavioral therapy, mindfulness-based stress reduction, self-management, exercise, and—in some cases—antianxiety or antidepressant medications.

Support groups can also be helpful, but the logistics of organizing them can be challenging, Dr. Syrjala said. The growth of online support groups for survivors of diverse cancer types and treatments has made these resources accessible to far more people, she noted.

For adolescent and young adult cancer survivors, peer support through programs like First Descents, an outdoor adventure therapy program that has been shown to reduce symptoms of psychological distress, can be helpful, said Bradley Zebrack, Ph.D., M.S.W., M.P.H., of the University of Michigan School of Social Work.

Some approaches that help adult cancer survivors cope with distress, including cognitive behavioral therapy and mindfulness-based stress management, can also help adolescents and young adults.

But these younger survivors have unique needs because “their lives are interrupted at a time when there is a lot of rapid emotional and psychological growth,” Dr. Zebrack said. “Re-engagement in work, school, and relationships with friends will be much more challenging for them than for people diagnosed with cancer when they are older and in later stages of life.”

Acceptance and Commitment Therapy for Fear of Recurrence

One approach that could help cancer survivors cope with distress is a newer form of cognitive behavioral therapy called acceptance and commitment therapy, or ACT.

“ACT supports survivors in figuring out what they can change by taking specific actions consistent with their values, yet recognizing the parts of their experience they can’t change,” explained clinical psychologist Shelley Johns, Psy.D., of the Regenstrief Institute and the Indiana University Melvin and Bren Simon Comprehensive Cancer Center.

For instance, she said, cancer survivors may always have concerns that the cancer will come back, but ACT can teach skills that help them “live with greater ease with those unchangeable realities.”

In a recent pilot study, Dr. Johns and her colleagues tested whether ACT could help breast cancer survivors better manage their fears of recurrence. Women in the study were randomly assigned to receive either 6 weeks of group-based ACT, a six-session survivorship education workshop, or a 30-minute group coaching session with a booklet on life after cancer treatment.

Six months after the intervention, participants in the ACT group reported greater reductions in the severity of their fear of recurrence than women in the other two groups. ACT also reduced anxiety and symptoms of depression at the 6-month follow-up point and improved survivors’ quality of life more than the other interventions, Dr. Johns said.

With ACT, she continued, “we offer coping skills so that fear is no longer ‘driving the car’ in survivors’ lives. The fear may still be in the car, yet it can ride in the back seat, while survivors keep their hands on the wheel and drive in their preferred direction.” These skills include pursuing meaningful activities, focusing on the present moment (mindfulness), and being kinder to yourself.

Storytelling to Help Survivors and Caregivers Cope with Distress

Addressing the needs of caregivers is another important area of research, Dr. Mayer said, as studies show that spouses and partners of cancer survivors are also more prone to anxiety than other people and may have their own health issues.

Health communication and behavioral scientist Wonsun (Sunny) Kim, Ph.D., of Arizona State University Edson College of Nursing and Health Innovation, is studying the effectiveness of a 4-week web-based digital storytelling approach to help both patients with cancer undergoing hematopoietic stem cell transplantation (HSCT) and their caregivers.

In an ongoing clinical trial, her team is investigating whether viewing personal, emotionally engaging “digital stories” told by other HSCT survivors and their caregivers during a 3-day digital storytelling workshop can help them cope with psychosocial distress, such as depression, anxiety, and social isolation.

“We encourage patients and caregivers to watch the digital stories together and discuss not just the story itself but also the emotions they felt” while watching, Dr. Kim said. Study participants are being followed for 3 months to learn whether the series of stories helps them talk with loved ones about how they are feeling, and thereby improve their emotional well-being. Patients and caregivers may not talk to each other about feelings such as anxiety “because they don’t want to worry the other person,” Dr. Kim noted.

If the approach is successful, she hopes to do a longer follow-up study to examine the effectiveness of the narrative-based digital storytelling approach for optimizing patient and caregiver psychosocial well-being during and after a transplant.

Additionally, she said, “The storytelling approach has broad applicability to other cancer types and other points in the cancer journey, depending on how we design the storytelling workshop” where the videos are made.

Exercising Together for Better Mental Health

At Oregon Health and Science University’s Knight Cancer Institute, exercise scientist Kerri Winters-Stone, Ph.D., is studying the effects of partnered exercise training on the physical and mental health and relationship quality of couples (survivors and their partners) coping with cancer.

“Cancer affects each partner’s physical and mental health and puts a strain on their relationship. It’s like a triple threat,” Dr. Winters-Stone said in a video being used to recruit study participants.

The Exercising Together trial is designed to learn whether and how exercise can benefit prostate, breast, or colorectal cancer survivors and their partners. Participants will be randomly assigned to exercise twice a week for 6 months in one of three groups: partnered exercise classes in a group setting, separate survivor and partner exercise classes in a group setting, or home-based, unsupervised, separate exercise for survivors and their partners.

The study will examine whether exercising together helps to reduce participating couples' anxiety, depression, and fear of recurrence and improve their physical health and the quality of their relationship.

“If couples train together as a team during exercise, we hope this can transfer outside of the gym and help them function better as a team in all facets of their life,” Dr. Winters-Stone said.

Her long-term goal is to make a compelling case that exercise should be included as a standard of care for every person with cancer. “We want partners to be included, too, because we know they’re also affected by cancer,” she said. “And that by keeping couples healthy, we achieve the best outcomes for everyone.”

Telehealth for Cancer Survivors in Rural Areas

Helping cancer survivors who live in rural areas cope with cancer-related anxiety and distress can be especially challenging. Survivors in these areas live far from large cancer centers, and “there often aren’t health providers in rural areas, especially mental health providers, who have oncology experience,” Dr. Danhauer said.

That’s where researchers hope that “telehealth” approaches such as therapy and other psychosocial support delivered by phone, mobile apps, and websites may be useful.

Dr. Danhauer and another clinical psychologist at Wake Forest, Gretchen Brenes, Ph.D., are conducting a pilot study that uses a cognitive behavioral therapy workbook as part of a stepped-care approach (based on the severity of symptoms) to help adult cancer survivors in rural areas who have clinically significant symptoms of anxiety or depression.

If randomly assigned to the stepped-care group, “people with more severe depression or anxiety will receive the workbook and work through it with a therapist on the telephone,” Dr. Danhauer said. Survivors with lower levels of depression or anxiety will go through the workbook on their own and check in with a research team member by phone every couple of weeks. Participants in the control group will receive information about resources, including local mental health providers.

If the pilot study results are promising, “we want to do a larger study looking at a telephone-based cognitive behavioral therapy intervention for distress in cancer survivors,” Dr. Danhauer continued.

She and Dr. Brenes also have a pilot research grant from Wake Forest Baptist Comprehensive Cancer Center to adapt the workbook and the telehealth approach linguistically and culturally for Hispanic cancer survivors.

Providing Resources When and Where People Need Them

The studies described here are just a sample of ongoing research to help cancer survivors cope with anxiety and distress, according to Ashley Wilder Smith, Ph.D., M.P.H., chief of NCI’s Outcomes Research Branch. “Cancer is many diseases and has many different trajectories, and researchers are exploring lots of ways to support cancer patients and survivors as they go through this experience,” Dr. Smith said.

Other examples of NCI-funded studies include a randomized trial of a self-management handbook, with or without telephone counseling, for improving psychological distress and other measures in an ethnically diverse group of cancer survivors and their informal caregivers, and a study of culturally adapted cognitive behavioral stress management and self-management for Hispanic prostate cancer survivors.

One challenge that remains, Dr. Syrjala said, is that “we need to have the systems in place to make resources available when and where people need them, especially after patients finish treatment.”

To help address this challenge, NCI’s IMPACT Consortium, an initiative funded through the Cancer Moonshot^SM, is looking at ways to incorporate the management of symptoms, including psychological symptoms, into electronic health records. This will allow such symptoms to be addressed in a more routine and comprehensive fashion in people with cancer and cancer survivors, Dr. Smith noted.

Finding the Silver Lining

Left unaddressed, serious anxiety, depression, or other types of psychological distress may leave cancer survivors unable to tend to their health care needs, Dr. Syrjala and other experts said. People may stop following treatment recommendations or avoid going to recommended follow-up appointments.

But surviving cancer can also lead to positive changes in a person’s life.

The flip side of psychological distress in survivors is “post-traumatic growth,” Dr. Syrjala said. The cancer experience may help survivors develop new strategies to manage emotional challenges, deepen their relationships with family or friends, and help them realize they have the strength to get through difficult situations. Surviving cancer may also lead people to re-evaluate their priorities and appreciate life more fully.

In addition, Dr. Smith said, “Cancer survivors may choose more healthy behaviors, such as exercising more or quitting smoking, because they are interested in a healthier life overall.”

People diagnosed with advanced cancer can face a host of challenges and stresses, from navigating the health care system to dealing with relationship disruptions and figuring out how to spend the time they have left, that can leave them vulnerable to depression. Yet cancer centers and clinics don’t routinely provide psychological support to all advanced cancer patients to help them cope.

In a new clinical trial, just three to six sessions of a tailored psychotherapy approach known as Managing Cancer and Living Meaningfully, or CALM, helped to lessen symptoms of depression in people recently diagnosed with advanced cancer. Results from the trial also showed that the approach may help prevent the onset of depression in those with advanced disease.

“We know there’s a lot of distress [among people with advanced cancer], and we’ve shown previously that, without treatment, the symptoms of depression get worse,” said study leader Gary Rodin, M.D., head of the Department of Supportive Care at Princess Margaret Cancer Centre in Toronto, Canada.

“The idea of CALM is to intervene proactively rather than just waiting for people to get distressed, anxious, depressed, and overwhelmed,” he said.

The sustained improvement among patients after as few as three CALM sessions was impressive, said Ann O’Mara, Ph.D., R.N., M.P.H., head of palliative research in NCI’s Division of Cancer Prevention, who was not involved in the study.

CALM therapy “addresses many issues that are above and beyond what palliative care services may [currently] provide,” Dr. O’Mara said. “If incorporated into a palliative care setting, this intervention could really help our patients with advanced cancer.”

Results of the randomized clinical trial were published June 29 in the Journal of Clinical Oncology.

Providing a Roadmap to Reduce Stress and Live Meaningfully

Dr. Rodin and colleagues Sarah Hales, M.D., Ph.D., and Chris Lo, Ph.D., developed CALM to help patients in four key areas: symptom management and communication with health care providers; changes in self and close personal relationships; spiritual well-being and a sense of meaning and purpose in life; and concerns about mortality and the future.

“We try to help people understand that there are many ways to think about their situation and many ways to live meaningfully,” Dr. Rodin said.

CALM therapy consists of three to six 45- to 60-minute sessions over 3–6 months. The patient’s primary informal caregiver is invited to one or more sessions when acceptable to both patient and therapist.

The approach provides a general framework or “roadmap” that therapists can modify based on their own personal style and culture and on a patient’s individual needs and concerns, Dr. Rodin explained.

A wide range of cancer care and palliative care providers, including nurses, physicians, psychologists, and social workers, can provide CALM therapy after receiving the necessary training, which consists of an intensive 2-day workshop and ongoing supervision on at least three cases. These clinicians have typically had experience engaging in conversations with people with advanced cancer but may not have prior formal training in psychotherapy.

“CALM is meant to be initiated as soon as possible after diagnosis of an advanced cancer, to help people live their lives as well as they can,” Dr. Rodin said. “Sometimes people get so swallowed up by the cancer care system, or they feel so hopeless, that they give up on life while they’re still relatively well physically. That’s what we’re trying to prevent.”

Reducing and Preventing Symptoms of Depression

To measure the effects of CALM on symptoms of depression, Dr. Rodin’s team enrolled 305 patients recently diagnosed with advanced or metastatic cancer and an expected survival of 12–18 months. Participants were randomly assigned to receive either usual care (154 patients) or usual care plus CALM (151 patients). Usual care may include specialized psychosocial oncology services, but a previous study by Dr. Rodin’s team showed that less than 10% of patients with advanced cancer received any form of structured psychotherapy at the cancer center where the trial took place.

Participants in CALM were still being actively treated for their cancer, and most therapy sessions took place in outpatient clinics.

The team used a standard nine-item questionnaire, known as PHQ-9, to measure symptoms of depression when patients first entered the study (baseline) and at 3 and 6 months. A PHQ-9 score of 5–9 points out of a 27-point maximum is considered mild depression and a score of 10–14 is considered moderate depression.

The researchers also assessed other outcomes not central to the trial, including distress about death, via standard questionnaires that participants completed at the time they entered the study, and again at 3 and 6 months after study entry.

At both 3 and 6 months, CALM participants reported less-severe symptoms of depression, on average, than those reported by participants in the usual care group. The benefits of CALM therapy appeared greater at 6 months than at 3 months, with a mean reduction in PHQ-9 scores of 1.29 and 1.09, respectively.

Although the overall difference in depressive symptoms between the two groups at 3 and 6 months was small, the ability to provide measurable improvement with the CALM approach is still notable, Dr. O’Mara said, because not all people with advanced cancer, like those in the study, are likely to experience depression.

To clarify the clinical meaning of their findings, the team performed additional analyses of the data in specific subgroups of patients. They found that CALM was more likely than usual care to provide a “clinically important” PHQ-9 reduction in depression of at least 5 points for participants who entered the study with a PHQ-9 score of at least 8 points at baseline.

These analyses also suggested “that not only does CALM reduce depression in some patients, it may also prevent the onset of depression” in participants who were not depressed at baseline, Dr. Rodin said.

Furthermore, the authors wrote, “The study findings suggest that participants with moderate levels of distress about dying and death benefited most from CALM therapy.”

Assessing the Universality of CALM

The optimal timing of CALM and the most appropriate and meaningful ways to assess its outcomes require further research, the study authors said.

In an earlier pilot study, people with advanced cancer described multiple benefits of CALM therapy. For instance, Dr. Rodin said, patients reported that CALM provided a safe place to talk about their feelings, allowed them to face their fears, and helped them face the end of life and live their lives meaningfully.

And, he continued, his team believes that the qualitative data from patient interviews is also very important when judging the potential benefits of a program such as CALM. Such data provide valuable information about the experience of CALM therapy and about the mechanisms by which it may exert its effect.

One key limitation of the new trial, the authors noted, is that it was conducted at a single, urban cancer center with primarily English-speaking, white, well-educated participants.

Dr. Rodin’s team has launched a global initiative to disseminate CALM in 20 countries to find out whether it can be generalized to people of diverse ethnicities and cultures.

Dr. Rodin’s team also is working with colleagues in Germany to develop an online version of CALM, which he said could make it available to people with more limited access to oncology and palliative care services, such as those living in rural areas.

How would you describe the state of what we know about the role of exercise for people with cancer and for long-term survivors?

In the past, clinicians typically advised their cancer patients to rest and avoid physical activity. However, what we learned from early exercise research in the 1990s and 2000s contradicted that advice. In fact, the field of exercise oncology—exercise and cancer—has grown exponentially in the past decade. There are more than 1,000 randomized controlled trials in this field. Multiple large epidemiologic and preclinical studies have also been completed, all of which have expanded our knowledge.

We now have the evidence to tell us, with great confidence, that those living with and beyond cancer will benefit from being more physically active. We are at a point in the evolution of the field where we can dose exercise precisely, just as we do with drugs, to address several cancer-related health outcomes.

Which cancer-related health outcomes can be improved with exercise?

The ACSM panel found evidence that providing specific exercise prescriptions for a number of cancer-related health outcomes benefitted people living with or beyond cancer. As an example, we saw strong evidence that an exercise program consisting of a half hour of aerobic exercise three times weekly was sufficient to improve anxiety, depression, fatigue, quality of life, and physical function in cancer survivors.

There was also evidence of a benefit for most of those same outcomes from twice-weekly resistance exercise. However, anxiety and depression do not appear to be improved by resistance training alone, but they do improve with resistance training in combination with aerobic training. In addition, the panel concluded that there is no increased risk of lymphedema from twice-weekly resistance training.

The current evidence is still insufficient as to whether exercise can improve other health outcomes, such as peripheral neuropathy, cardiotoxicity, cognitive functioning, pain, or chemotherapy completion rate.

Can exercise improve survival for individuals with cancer?

Yes. We concluded from the evidence that exercise after a diagnosis of breast, colon, or prostate cancer is associated with longer survival. While there is insufficient evidence to draw the same conclusion for all cancer types, there are enough benefits of physical activity, in general, that we recommend that survivors of all cancers follow the general public health recommendations for physical activity: 2 and 1/2 to 5 hours per week of moderate-intensity activity, or 1 and 1/4 to 2 and 1/2 hours per week of vigorous activity.

Of course, an exercise regimen should be tailored to fit each cancer patient’s preference and functional status. To prescribe a safe and effective exercise program, the patient’s age, type and stage of cancer, treatment side effects, and other health considerations should be evaluated first.

Only a minority of cancer survivors exercise regularly. What will it take to shift the general understanding about the relationship between cancer and exercise?

We need a paradigm shift here, as we have had with exercise and heart disease. If we ask the average person on the street if exercise is good for the heart, he or she will say yes. That was not always the case, but at some point there was a shift. So, we need a multipronged initiative to encourage a change in thinking. A major effort should be geared toward increasing awareness of the importance of exercise among cancer patients, as well as providers, caregivers, and the general public.

ACSM has just started a new initiative called Moving Through Cancer, which focuses on increasing awareness of the value of exercise for cancer survivors, along with educating the cancer clinician workforce to refer, coordinate, and prescribe exercise; expanding opportunities to exercise; and shifting policy so that, by 2029, exercise is standard practice for all patients living with and beyond cancer.

We believe that increasing awareness will involve reaching out to mainstream and social media, updating textbooks for exercise science undergraduates, and developing continuing education for oncology practitioners, among other efforts.

My hope is that someday, if you ask anyone walking down the street whether exercise is valuable for cancer survivors, the response will be an emphatic “Yes.”

Can Exercise Help Treatment-Related Side Effects?
In addition to demonstrating a number of exercise-related benefits for cancer survivors, the ACSM reports also highlight several emerging areas of research, including whether exercise can ameliorate treatment-related side effects (e.g., cardiotoxicities, peripheral neuropathy) or facilitate treatment tolerance and effectiveness.

According to Frank Perna, Ed.D., Ph.D., program director in NCI’s Division of Cancer Control and Population Sciences (DCCPS), the evidence for exercise’s impact on many of these outcomes is promising but still insufficient. However, he explained, DCCPS is supporting studies that will help to strengthen the evidence base and address these questions and others related to the impact of exercise on cancer.

What is the most important take-home message for providers in these updated guidelines?

Since many cancer survivors are sedentary, the first and most important message providers can give their patients is that they don’t need to become marathoners to reap the benefits of exercise. Going from no exercise to some exercise will be useful for their health.

The ACSM's recommendation to providers is simple: Ask cancer patients about their physical activity. If their activity is inadequate, providers should advise their patients to do more.

Even if that is all providers have time to do, it demonstrates to patients that physical activity is an important part of managing their health and lays out the expectation that being physically active is healthier than being sedentary. This is true even for patients with advanced disease and those experiencing limitations, although those cancer patients will need a medically supervised program.

Are clinicians prepared for these discussions?

Adding yet another task to a clinician’s to-do list for patient encounters is a challenge. But providers who routinely ask their patients about physical activity and provide referrals to exercise programs told us their patients both enjoy and feel empowered by the exercise program. This, in turn, can become a bright spot in the clinical encounter and encourage the practice of discussing exercise.

The primary reason that providers do not have these discussions with cancer patients is lack of time. However, some have expressed concern that they don’t have the training needed to answer questions about exercise or that they may feel uncertain about the safety of exercise for a particular patient—and frankly, most people, and particularly health care providers, don’t like being faced with questions they cannot answer.

This is what the Moving Through Cancer initiative is eager to address. The website helps providers refer patients to places where their questions can be answered and high-quality exercise programs can be provided. Since most exercise programs require physician approval before patient participation, physicians are key to recommending such programs to their patients.

What sorts of behavioral and infrastructure changes are needed to incorporate exercise into standard cancer care?

In addition to raising awareness, we need to find ways to make exercise oncology a standard part of cancer care. This would include professional development for cancer care providers that incorporates training in how to have brief, informative, and effective conversations about physical activity with patients. It would also include professional development for rehabilitation practitioners, such as physiatrists, occupational, and physical therapists; and exercise science students and fitness professionals.

There is a need to develop instruction that can be dropped directly into curricula so that these practitioners are armed with knowledge about how best to help cancer patients become physically active, including how to design exercise prescriptions that deliver the right amount of exercise to meet the specific needs and abilities of their patients.

Sufficient resources must be allocated by insurers and communities so that high-quality exercise programs are widely available and accessible. The Moving Through Cancer initiative has a growing registry that we hope will become a trusted resource for oncology professionals to use for referrals to appropriate programs, as well as a resource to help patients and families find programs near them.

We also urge investigators to help advance the science in this area. There is a rich evidence base on exercise and cancer, so we’re encouraging researchers to conduct implementation science and health care delivery research to better understand how to encourage the adaptations needed so that all people living with and beyond cancer can be as active as possible.

Is there a role for survivors in helping to advance progress in this area?

There are multiple examples of patients being the catalyst to shift cancer care. Survivors and patient advocates can help create change in clinical cancer care by demanding that practitioners assess, advise, and refer patients to appropriate exercise programs.