Living With Uncertainty

Susan L.

Hodgkin's disease, Breast and Bladder Cancer Survivor

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The uncertainties that cancer can cause don’t always end when treatment ends. You may find that your life has changed in unexpected ways, which may make you feel uncertain and worried about what your life is going to be like after cancer. This is called living with uncertainty.

Despite your uncertainty, you may be able to remain positive, but it can be difficult and upsetting. Some survivors think that if they aren’t sure about most things in their life, bad things will happen. It is important to realize some things, like how long you are going to live, no one can know for certain. It is possible to learn to live with uncertainty and not feel so overwhelmed by the things that you do not know and cannot control.

Do All Survivors Live With Uncertainty?

All cancer survivors live with some uncertainty about their future, but it affects people in different ways. How you deal with it could be related more to your personality and coping style or how much you think about cancer.

Survivors may be uncertain about:

  • Health issues.
  • The quality of their medical care.
  • How long they will live.
  • Their employment situation, job or career concerns.

Post treatment, some survivors put the cancer experience in the past and hardly ever think about it. Uncertainties may not bother them. Others think about cancer often and find those thoughts are overwhelming. They may live with fears about whether the cancer will come back or how it will affect the future. Still other survivors focus on the positive changes cancer has brought such as a new purpose and strength in life. They may more easily accept and adapt to changes and challenges. Any one of these reactions post treatment is normal.

When Do Survivors Struggle with Uncertainty?

There may be times when you are suddenly faced with a lot of uncertainty, like when going for a check-up, and wonder if the cancer has spread. You may be concerned about future relationships or having children. When job hunting, you may be worried about your employer finding out about your cancer diagnosis and whether you can get health insurance.

You may also live with a general feeling of uncertainty about what tomorrow will bring. Having cancer can make you more aware of uncertainties because you never expected to get cancer in the first place. You may find yourself thinking, "If I can get cancer, then what else can happen?" This general feeling of uncertainty in your daily life is a common experience for cancer survivors.

Some survivors struggle with depression, distress and anxiety that may be related to living with uncertainty. People may tell you that you should be happy you survived and shouldn’t worry about the unknown. Regardless, it is also okay to talk about your uncertainty and how makes you feel. Talking with another person about your feelings and what is causing them can help you understand more clearly what you are feeling and help you find ways to manage them.

Talk to Your Health Care Team

  • Start by reading about healthy behaviors.
  • Make a list of healthy behaviors you are considering and questions you have.
  • Bring your list of healthy behaviors and questions to your health care appointment to discuss how you can start adopting healthier behaviors that work for your situation.

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Uncertainty may motivate you to include healthier behaviors in your lifestyle like eating better, becoming more physically active and paying closer attention to changes in your body. Feeling like you are doing something to take charge may make you feel less uncertain about your future.

Some survivors find motivation to strengthen relationships with loved ones and friends. Some have described how fighting and overcoming cancer gave them the self-confidence and emotional strength to create positive changes in their lives. If you live with uncertainty about the future, it can motivate you to make the most of every day.

Enjoying Life After Cancer

If living with uncertainty is affecting your quality of life it may be time to talk with a licensed counselor, therapist or trusted spiritual or religious counselor.

Questions to Ask a Potential Therapist

Speak honestly with the therapist and let him or her know why you want to work with them. Questions to ask include:

  • What education background do you have?
  • What professional license do you have?
  • What is your experience working with people with cancer?
  • What do you understand about the emotional response to this illness?
  • Will costs be covered, and do you take my insurance?
  • Do you work with people who are anxious? Depressed?
  • Do you know community resources for people with cancer?

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You can always ask your health care team for a referral to a therapist who works with other cancer survivors. Most cancer centers employ oncology social workers and psychologists who are specially trained to work with cancer survivors and their families. Even if you are not a patient at a cancer center, an oncology social worker may meet with you or refer you to someone else in the community.

The Association of Oncology Social Work is also a good resource for patient information and to help you find help in your area. Also contact the American Psychosocial Oncology Society for referral to a therapist in your area.

It may also be helpful to talk with other survivors, especially if you are uncomfortable talking about certain subjects with your family or friends. Support groups provide a safe environment to share experiences with other survivors, learn new ways to handle difficult situations and talk about the emotions. You will see different styles of coping with stress and adjusting to life as a cancer survivor.

If you are worried about whether your cancer will come back, talk to your health care team about risk factors, cancer prevention and screening and other healthy behaviors.

Ask About Cancer Prevention Screening Guidelines

  • Regularly scheduled mammography and pap smear for women.
  • PSA testing for prostate cancer.
  • Colonoscopy for colorectal cancer.

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Communicating openly with your health care team may help you feel less uncertain your health or medical care. Ask about risk factors, cancer prevention and screening and other healthy behaviors. And always provide information about your cancer history to all of your health care providers.

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Works Cited

Haase, J., & Rostad, M. 1994. Experiences of completing cancer therapy: Children's perspectives. Oncology Nursing Forum, 21(9), 1483-1492.

Leigh, Susan. 1992. Myths, monsters, and magic: personal perspectives and professional challenges of survival. Oncology Nursing Forum, 19:1475-1480.

Zebrack, Brad. 2000. Quality of life of long-term survivors of leukemia and lymphoma. Journal of Psychosocial Oncology, 18(4); 39-59.

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