Living With Uncertainty: Detailed Information

The uncertainties that cancer can cause do not always end with treatment. While the immediate illness may be in remission, you may find that your life has changed in unexpected ways. You may feel uncertain about the changes cancer caused and worry about what your life is going to be like after cancer. Many cancer survivors find that they feel unsure about many aspects of their lives. This is called living with uncertainty.

Some things survivors may be uncertain about:

• Their health
• The quality of their medical care
• How long they will live after treatment
• Their careers

You may be able to live with uncertainty in your life and remain positive. However, living with uncertainty can also be very difficult and upsetting. Some survivors think that if they aren’t certain about most things in their life, then bad things are likely to happen. It’s important to realize that there are some things, like how long you are going to live, that you can’t know for certain. However, it is possible to learn to live with uncertainty and not feel so overwhelmed by the things you don’t know and can’t control.

Do all survivors live with uncertainty?

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

• You may put your cancer experience in the past and choose to hardly ever think about it. The uncertainties that cancer causes may not bother you very much.
• You may think about cancer often and find your thoughts are overwhelming. You may live with a lot of fears about whether the cancer will come back or how your cancer will affect your future.
• You may think about the positive changes cancer has created in your life. You may want to accept and adapt to those changes.

All of these responses are normal. But if the uncertainty is preventing you from enjoying life, or you have a lot of fear about it and feel overwhelmed, you should talk to a mental health professional about ways you can manage the uncertainty. Uncertainty may be a part of your life now, but it doesn’t have to affect your quality of life.

How does living with uncertainty affect some survivors?

Living with uncertainty can affect you in many different ways. Living with uncertainty may cause you to feel upset or overwhelmed. It may motivate you to improve your life after cancer. There is no right or wrong way to feel about living with uncertainty; however, you can learn ways to manage all the uncertainties in your life.

Research has shown that some survivors experience depression, distress and anxiety, and that these struggles can be related to living with uncertainty. Some people may tell you that you should just be happy that you survived, and that you shouldn’t worry about all the uncertainties that you see as part of your life now. It’s important to understand that living with uncertainty can be very difficult at times, and it’s okay to talk about how it makes you feel.

While uncertainty about your health may lead you to worry, it may also motivate you to include more healthy behaviors in your lifestyle. You may chose to eat better, become more physically active to whatever extent possible and pay better attention to changes in your body. Feeling like you are doing something to promote good health may make you feel less uncertain about your future.

Living with uncertainty can also cause survivors to strengthen relationships with family members and friends. Some survivors 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.

When might survivors notice uncertainty in their lives?

Uncertainty may or may not be part of your daily life. However, at certain moments during your survivorship, you may find that you are suddenly faced with a lot of uncertainty.

Examples of moments when you may notice that you are living with uncertainty:

• Going in for a check-up and wondering if your cancer has returned
• Thinking about getting married and wondering if you can have children
• Trying to find a new job and wondering if you can get health insurance

It is also possible to experience a general feeling of uncertainty about what tomorrow is going to bring. Many survivors think that before cancer, they had fewer doubts or uncertainties. 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.

What are some suggestions for survivors who find living with uncertainty difficult?

Below is a brief list. For more information, see Suggestions.

• If living with uncertainty overwhelms you, talk to a mental health professional.
• Talk to other survivors about how they are living with uncertainty.
• If you are worried about whether your cancer will come back, talk to your health care team about cancer prevention and healthy behaviors.

This document was produced in collaboration with:
Brad J. Zebrack, PhD, MSW
Assistant Professor, University of Southern California School of Social Work