Coping with Cancer

Life Changes After Cancer

Many people who’ve survived cancer are living longer lives, thanks to better diagnostic tests and treatments. But life after cancer can bring its own challenges. “Many cancer survivors look forward to returning to a normal life after treatment ends,” says Dr. Julia Rowland of NIH’s National Cancer Institute. “But for some, this can be a stressful period.”

If you or a loved one has survived cancer, you can learn more about what to expect in “Life after Cancer,” the newest topic added to the NIHSeniorHealth web site for older adults. The new topic, at www.nihseniorhealth.gov/lifeaftercancer/toc.html, has tips for managing follow-up care and making positive adjustments to your lifestyle. You’ll learn about common changes to physical and emotional health and how to cope with them. You’ll also learn how surviving cancer might affect your relationships with family and friends. The site also describes how your age and health status can affect recovery and survival.

All information on NIHSeniorHealth (www.nihseniorhealth.gov) is based on the latest research in cognition and aging. Upcoming topics include periodontal disease, dry eye and collecting your family health history.

Source: NIH News in Health (NIH)1

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Back to: « Cancer

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A person diagnosed with cancer faces many stressful issues. These may include:

  • Fear of death.
  • Changes in life plans.
  • Changes in body image and self-esteem.
  • Changes in day to day living.
  • Money and legal concerns.

Sadness and grief are normal reactions to a cancer diagnosis. A person with cancer may also have:

Not everyone who is diagnosed with cancer reacts in the same way. Some cancer patients may not have depression or anxiety, while others may have high levels of both.

Signs that you have adjusted to the cancer diagnosis and treatment include being able to stay active in daily life and continue in your roles such as:

Source: NCI (NIH)2

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An assessment is done to find the reasons for hopeless feelings or thoughts of suicide.

Talking about thoughts of suicide with your doctor gives you a chance to describe your feelings and fears, and may help you feel more in control. Your doctor will try to find out what is causing your hopeless feelings, such as:

  • Symptoms that are not well controlled.
  • Fear of having a painful death.
  • Fear of being alone during your cancer experience.

You can find out what may be done to help relieve your emotional and physical pain.

Controlling symptoms caused by cancer and cancer treatment is an important goal in preventing suicide.

Having constant discomfort or pain can cause you to feel desperate. Keeping pain and other symptoms under control will help to:

  • Relieve distress.
  • Make you feel more comfortable.
  • Prevent thoughts of suicide.

Treatment may include antidepressants. Some antidepressants take a few weeks to work. The doctor may prescribe other medicines that work quickly to relieve distress until the antidepressant begins to work. Patients usually are given only a small number of doses at a time. For your safety, it's important to have frequent contact with a health care professional and avoid being alone until your symptoms are controlled. Your health care team can help you find social support.

Source: NCI (NIH)3

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Most children cope well with cancer. A small number of children may have:

These problems can affect the child's cancer treatment and enjoyment of life. Children with severe late effects from cancer treatment may be more likely to have symptoms of depression. A mental health specialist can help children with depression.

Source: NCI (NIH)4

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Coping and Support

Cancer can create a sense of isolation from your friends and family, who may not understand what you are going through. As a young adult, you may feel like you are losing your independence at a time when you were just starting to gain it. Perhaps you just began college, landed a job, or started a family. A cancer diagnosis puts most people on a rollercoaster of emotions. Because cancer is relatively rare in young adults, you may encounter few patients your age. Moreover, treatment may require hospitalization far from home which can lead to emotional isolation. A desire for normalcy may keep you from sharing your cancer experience with your healthy peers, adding to a sense of isolation.

However, you are not alone. Cancer is treated by a team of experts who address not only the disease but also your emotional and psychological needs. Some hospitals offer comprehensive support programs. Support can come in many forms, including counseling, retreats sponsored by organizations that serve young adults with cancer, and support groups. This support can relieve feelings of isolation and help restore a sense of normalcy.

Young people with cancer say it’s especially helpful to connect with other young people who can offer insights based on their own experiences with cancer. Learn more about how other young people with cancer have coped in AYAs Are Not Alone: Confronting Psychosocial Challenges of Cancer.

Source: NCI (NIH)5

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Coping with Cancer

Adjusting to a child’s cancer diagnosis and finding ways to stay strong is challenging for everyone in a family. Our page, Parents Who Have a Child with Cancer, has tips for talking with children about their cancer and preparing them for changes they may experience. Also included are ways to help brothers and sisters cope, steps parents can take when they need support, and tips for working with the health care team. Various aspects of coping and support are also discussed in the publication Children with Cancer: A Guide for Parents.

Source: NCI (NIH)6

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Survivorship

It’s essential for childhood cancer survivors to receive follow-up care to monitor their health after completing treatment. All survivors should have a treatment summary and a survivorship care plan, as discussed on our Survivorship Care for Children page. That page also has information on clinics that specialize in providing follow-up care for people who have had childhood cancer.

Survivors of any kind of cancer can develop health problems months or years after cancer treatment, known as late effects, but late effects are of particular concern for childhood cancer survivors because treatment of children can lead to profound, lasting physical and emotional effects. Late effects vary with the type of cancer, the child’s age, the type of treatment, and other factors. Information on types of late effects and ways to manage these can be found on our Survivorship Care for Children page. The PDQ® Late Effects of Treatment for Childhood Cancer summary has in-depth information.

Survivorship care and adjustments that both parents and children may go through are also discussed in the publication Children with Cancer: A Guide for Parents.

Source: NCI (NIH)7

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While cancer survivors are living longer after their diagnosis, at least one-third of the more than 14 million survivors in the United States face physical, mental, social, job, or financial problems related to their cancer experience. These effects are also felt by family members, friends, and others who provide comfort and care to survivors.

Source: CDC Features8

Carer Issues with Cancer

“Cancer caregivers often spend more hours per day providing more intensive care over a shorter period of time,” Kent says. “The health of cancer patients can deteriorate quickly, which can cause heightened stress for caregivers. And aggressive cancer treatments can leave patients greatly weakened. They may need extra care, and their medications may need to be monitored more often.”

Cancer survivorship, too, can bring intense levels of uncertainty and anxiety. “A hallmark of cancer is that it may return months or even years later,” Kent says. “Both cancer survivors and their caregivers may struggle to live with ongoing fear and stress of a cancer recurrence.”

Source: NIH News in Health (NIH)9

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People who have cancer often live at home and get help from informal caregivers—people who help them without being paid. The majority of caregivers are women.

Source: CDC Features10

Social Issues with Cancer

Who has access to a person’s genetic test results?

Medical test results are normally included in a person’s medical records, particularly if a doctor or other health care provider has ordered the test or has been consulted about the test results. Therefore, people considering genetic testing must understand that their results may become known to other people or organizations that have legitimate, legal access to their medical records, such as their insurance company or employer, if their employer provides the patient’s health insurance as a benefit.

However, legal protections are in place to prevent genetic discrimination, which would occur if insurance companies or employers were to treat people differently because they have a gene mutation that increases their risk of a disease such as cancer or because they have a strong family history of a disease such as cancer.

In 2008, the Genetic Information Nondiscrimination Act (GINA) became federal law for all U.S. residents. GINA prohibits discrimination based on genetic information in determining health insurance eligibility or rates and suitability for employment. However, GINA does not cover members of the military, and it does not apply to life insurance, disability insurance, or long-term care insurance. Some states have additional genetic nondiscrimination legislation that addresses the possibility of discrimination in those contexts.

In addition, because a person’s genetic information is considered one kind of health information, it is covered by the Privacy Rule of the Health Information Portability and Accountability Act (HIPAA) of 1996. The Privacy Rule requires that health care providers and others with medical record access protect the privacy of health information, sets limits on the use and release of health records, and empowers people to control certain uses and sharing of their health-related information. Many states also have laws to protect patient privacy and limit the release of genetic and other health information. The National Human Genome Research Institute Genetic Discrimination page includes links to more information about GINA, HIPAA, and other legislation related to genetic discrimination in insurance or employment.

Source: NCI (NIH)11

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How are genetic tests regulated?

U.S. laboratories that perform health-related testing, including genetic testing, are regulated under the Clinical Laboratory Improvement Amendments (CLIA) program. Laboratories that are certified under CLIA are required to meet federal standards for quality, accuracy, and reliability of tests. All laboratories that do genetic testing and share results must be CLIA certified. However, CLIA certification only indicates that appropriate laboratory quality control standards are being followed; it does not guarantee that a genetic test being done by a laboratory is medically useful.

The Centers for Medicare and Medicaid Services has more information about CLIA programs. The National Library of Medicine also has information about how genetic testing is regulated and how to judge the quality of a genetic test. This information is available in the Genetics Home Reference.

Source: NCI (NIH)12

Family Issues with Cancer

Family members also have a risk of depression.

Anxiety and depression are also common in family members caring for loved ones with cancer. Children are affected when a parent with cancer is depressed and may have emotional and behavioral problems themselves.

Good communication helps. Family members who talk about feelings and solve problems are more likely to have lower levels of anxiety and depression.

Source: NCI (NIH)13

Work Issues with Cancer

Concerns About Work and Money

Cancer survivors may struggle to pay for medical care and are more likely to declare bankruptcy than people without a cancer history. They also face work-related concerns because of their cancer experience. While many survivors return to work, about one-third cannot work at all or have less ability to work due to mental and physical health problems.3 4

What Can Be Done?

Photo of a senior couple paying bills

To help address money problems and make the return to work easier, survivors can learn more about—

  • Changes in health care in the United States and options for affordable health insurance.
  • Ways in which their employer may be able to help, like a non-traditional work schedule, employee assistance programs, and options for employees to donate unused paid time off to sick coworkers.
  • The Family and Medical Leave Act and short-term disability leave.

Source: CDC Features14

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References

  1. Source: NIH News in Health (NIH): newsinhealth.nih.gov/ 2010/ April/ capsules.htm
  2. Source: NCI (NIH): cancer.gov/ about-cancer/ coping/ feelings/ depression-pdq
  3. ibid.
  4. ibid.
  5. Source: NCI (NIH): cancer.gov/ types/ aya
  6. Source: NCI (NIH): cancer.gov/ types/ childhood-cancers
  7. ibid.
  8. Source: CDC Features: cdc.gov/ cancer/ dcpc/ resources/ features/ CancerSurvivorship/ index.htm
  9. Source: NIH News in Health (NIH): newsinhealth.nih.gov/ issue/ dec2015/ feature1
  10. Source: CDC Features: cdc.gov/ cancer/ dcpc/ resources/ features/ WomenAndCancer/ index.htm
  11. Source: NCI (NIH): cancer.gov/ about-cancer/ causes-prevention/ genetics/ genetic-testing-fact-sheet
  12. ibid.
  13. Source: NCI (NIH): cancer.gov/ about-cancer/ coping/ feelings/ depression-pdq
  14. Source: CDC Features: cdc.gov/ cancer/ dcpc/ resources/ features/ CancerSurvivorship/ index.htm

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Note: This site is for informational purposes only and is not medical advice. See your doctor or other qualified medical professional for all your medical needs.