I’m a survivor. Shouldn’t I be happy?

Dealing with post-treatment stress, anxiety, guilt and fear of recurrence

After cancer treatment, most patients go into a stage of healing and recovery. You no longer are overwhelmed with appointments, treatments, scans, and blood draws. This allows for time to reflect, which may stir up a number of mixed emotions. You might feel obligated to put on a happy face and celebrate. You may feel relieved. You may also experience some anxiety, fear and/or guilt … and that’s okay.

Fear of Recurrence

As you transition from active treatment to surveillance, day-to-day care and monitoring now becomes your job, and not seeing the cancer care team as often may leave you feeling uneasy. It’s hard to know if or when a patient might experience a recurrence and this unpredictability can contribute to anxiety. This is a common fear of survivors. The good news is there are things you can do to cope and decrease fear or anxiousness.

First, let your doctor know how you are feeling. Every patient is different and each person worries about different things. If your health care providers are aware of your concerns or worries, they can talk with you to help ease some of those fears. They can provide information about what you should be watching for and which symptoms to report. You may have multiple questions to ask the doctor, so keep a journal to remember important questions. Or if it’s something you are immediately concerned about, call the cancer center’s triage line to speak with a nurse.

Although you may not ultimately be able to control if your cancer comes back or not, there are certainly positive ways that you can influence your health. Focus on what you can control, such as being informed about your diagnosis and ways to reduce your risk of recurrence. For example, there is good evidence that being a healthy weight can decrease the risk of cancer recurrence. Eating a healthy diet and being active are good ways to help with both physical and mental health. Your doctor can support your efforts to engage in healthy behaviors by talking with you or referring you to a dietician or physical therapist.

Finding ways to relax and distract yourself from thoughts and fears can also be beneficial to your health. Meditation, yoga and massage therapy are all great ways to relax. Finding activities that you enjoy and making time to do those things can help with stress management. Activities such as reading, observing nature, listening to music, or getting together with friends can improve mood and help in your transition to survivorship.

Lastly, talk to other people about your feelings. There are a number of ways that are helpful for expressing emotions. Consider talking with a friend or family member to share how are you feeling. Join a cancer support group at the cancer center or in the community, such as Gilda’s Club. There are both in-person support groups and online communities where you can meet and talk to other people who have had a similar experience.

You may also receive support from a counselor who specializes in working with cancer survivors. While most patients have occasional thoughts or fears of recurrence, anxiety is a persistent state of worry that interferes with quality of life and may impact mood, sleep, or appetite. Your doctor can assist in referring you to a counselor if you feel that you would benefit from having professional support.

Survivor’s Guilt

Some survivors experience what is called “survivor’s guilt.” This is when a survivor experiences feelings of guilt that may stem from a thought that there was something you could have done differently to have either prevented the cancer or spotted it sooner, or you may feel guilty that you survived, while others with your same diagnosis did not have the same outcome.

Survivor’s guilt can be common, but again, there are ways to cope. First, do not consider yourself at fault for your diagnosis. You cannot control if you or someone else gets cancer or how they will respond to treatment. Similar to dealing with a fear of recurrence, you can also use distraction and relaxation techniques, join a support group, or talk with a counselor.

A few different ways to deal with guilt is to find ways to express your thoughts and emotions. You may also try to connect with things that help you experience gratitude or to feel happy. Keeping a journal and writing down these thoughts, both positive and negative, help process your emotional response to your cancer experience. Sometimes you just need a good laugh. Use humor to help with your emotions by watching a funny movie, reading funny jokes or quotes, or think about a funny memory.

Other Stressors

There may be a number of different things that can lead to post-treatment distress. You might experience stress related to finances, persisting side effects of treatment, body changes, or decreased physical function. Having some stress is normal but sometimes stress can turn into anxiety.

If you find yourself feeling stressed most days of the week, or you notice that you have decreased or little to no interest in the things you once enjoyed doing, then talk to your doctor and express what is causing this stress. Your doctor or counselor can suggest resources to help with your stress and anxiety. If you are experiencing persistent or moderate to severe problems with mood or coping, your doctor may suggest counseling.

Social workers can help with work and finance-related stressors. Physical therapists can help with mobility issues and develop an appropriate exercise program. Dieticians can help with diet and weight loss. A sexual counselor is also available.

Ultimately, know that you are not alone and that your health care provider and our staff are here to support you. Talk to a doctor, nurse, or social worker about the things that are bothering you so that we can better help and support you and your family in this time of transition.

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About Survivorship Clinic

This blog originally appeared in the monthly newsletter for the Survivorship Clinic at UofL James Graham Brown Cancer Center. The Survivorship Clinic, headed up by Whitney Pitman, APRN, specifically focuses on extended survivorship, which is the period of time immediately following treatment completion. During this time, patients are transitioning from active treatment into active surveillance. The clinic helps patients transition from active treatment into surveillance mode, educating patients on their potential short and long-term side effects of treatment. The clinic focuses on restoring function and improving quality of life. Patients can be referred to the clinic once their treatment is complete.

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