Why the fear is so common
Finishing treatment is supposed to feel like a finish line. For many people it feels more like stepping off a ledge. The National Cancer Institute (NCI) notes that the end of treatment can bring relief and also fear and anxiety, and that probably the most common fear is that the cancer will come back. NCI calls it a big source of distress for many people who have been through treatment.
Part of the reason is structural. During treatment, you saw your care team often and someone was actively fighting the cancer. Afterward, the visits thin out. NCI notes that people may feel more anxious as they see their treatment team less often. The American Cancer Society (ACS) describes fear and anxiety as normal parts of survivorship, says worry about recurrence is usually most intense in the first year after treatment, and notes that it usually improves over time.
Having this fear does not mean you are being negative or ungrateful. It means you have lived through something serious and your mind is trying to keep watch.
NCI describes the months after treatment as a time of change that some people call a "new normal": less about getting back to the life you had and more about finding out what is normal for you now. Living with some uncertainty is part of that adjustment. The goal is usually not to erase the fear, but to shrink it to a size that leaves room for the rest of your life.
What tends to stir it up
Even when the fear has quieted, certain moments can bring it back. NCI and the ACS describe common triggers such as:
- Follow-up visits, screenings and waiting for test results
- A new symptom, ache or change in your body
- The anniversary of your diagnosis
- A loved one's illness, or hearing that someone else has been diagnosed with cancer
Other reminders are more personal: a song from the months of treatment, the drive past the hospital, a well-meant question at the wrong moment. Knowing your own triggers lets you plan for them instead of being ambushed. If scan weeks are the hardest part, Scanxiety: Coping With Fear Before Follow-Up Tests focuses on that wait.
The problem of every ache and pain
Many survivors describe scanning their bodies for signs. A headache becomes a question; a sore back becomes a verdict. NCI says it is common for survivors to fear every ache and pain, and also that a new symptom does not necessarily mean the cancer has returned. Many are problems a doctor can readily address.
NCI offers practical steps. Ask your team how long particular side effects are likely to last and which symptoms they want to hear about. Keep a notebook of symptoms and emotional ups and downs, and bring your questions to follow-up visits. If something worries you, call and ask whether you need an appointment; sometimes the conversation alone settles the fear. NCI notes that over time, many people start to recognize certain sensations as normal for their body now.
Ways to live alongside the uncertainty
No one can promise that cancer will not return, and trying to argue yourself out of the fear rarely works. The ACS notes that telling yourself not to worry, or criticizing yourself for being afraid, will not make the feelings go away. What tends to help is making room for the fear without letting it set the agenda:
- Name the feeling. The ACS suggests recognizing fear and anxiety instead of hiding them, because naming them helps you think about how to cope.
- Talk it through. Saying the fear out loud can help you find what sits underneath it, such as dread of repeating treatment, losing control of your life, or facing death.
- Write, draw or make music. The ACS mentions journaling and expressing yourself through art or music.
- Stick with your follow-up plan. A main goal of follow-up care is to check for recurrence, and the ACS notes that keeping these visits can help you feel more in control.
- Ask for a follow-up care plan. NCI suggests having a written summary of your treatment and next steps, which may give you a sense of control.
- Use waiting time well. NCI suggests seeing friends, reconnecting with people, or doing something restorative while results are pending.
- Practice relaxation and stay active within your team's guidance. NCI notes that relaxation exercises and meditation can help with stress, and that moderate exercise can help reduce anxiety and depression.
Some survivors describe putting their energy into what they can do now, such as staying as healthy as possible and enjoying the good parts of life, rather than trying to stop every frightening thought. That is a skill, and it usually develops slowly.
When the fear takes over, and where support fits
For some people the fear does not fade. NCI describes health anxiety in survivors, which can include being highly alert to any possible symptom, an intense focus on cancer status, and asking for tests and visits more often or earlier than needed. You might also notice that you avoid making plans, cannot enjoy good news, or lose sleep for days before each appointment. The ACS advises letting your care team know if the worry is not easing over time.
NCI suggests that if your fears are more than you can handle, you ask for a referral to someone to talk to. A therapist can help you understand why the fear has such a grip and build ways of living with uncertainty; questions about medication belong with a physician. Dr. Lehmann is a licensed clinical psychologist in Franklin, Michigan, with an insight-oriented, integrative approach. Read about cancer-related emotional support and contact the practice to ask whether she can help with your situation. If treatment ended a while ago, Therapy for Cancer Survivors speaks to that stage.