Life after cancer: survivorship, “now what?” and fear of it coming back

Regular appointments can feel reassuring, because someone is checking. When they space out, worry may rise.

In general, recovery takes much longer than treatment did. Many survivors say they didn’t realize how much time they would need, which can lead to disappointment and frustration.

When you were diagnosed, you may have put concerns about family, work or money aside. Now that treatment is over, they may come back.

What can help

• Ask a social worker about practical help
• Deal with one thing at a time
• Write the worries down so they feel smaller

During treatment many people focus on getting through each day. Afterwards, anxiety, sadness and sometimes depression can appear. Many describe it as an emotional roller coaster.

The word “survivor” helps many people think about embracing life beyond their illness.

You may not like the word, or feel it doesn’t apply to you. Some people say “living with cancer”, “after cancer”, or simply use their name.

Some describe survivorship as being “disease-free, but not free of your disease.” You may still be coping with effects on your body and mind.

Many survivors say cancer led them to make important changes, like taking time to appreciate each day or taking better care of themselves.

Questions to sit with

• What do I want more of?
• What do I want less of?
• Who do I want close to me?

You don’t need a new life plan straight away. Take it one day at a time, and give yourself time to adapt.

Whatever you decide, try to do what is right for you and not compare yourself with others.

Some survivors find new meaning, or become advocates for cancer research and care. Others simply want to get back to ordinary life.

In general, visits are every 3 to 4 months during the first 2 to 3 years after treatment, then once or twice a year. Your own schedule may be different.

It should include

• Contacts for your care team
• The date you were diagnosed
• The type of cancer
• Pathology reports
• Details of your treatment

Your treatment team should give you a plan for future care. It may also cover emotional, social or money needs. Having one may give you a sense of control over your health after treatment.

• Emotional concerns, like anxiety or low mood
• New or lasting symptoms
• Problems that affect daily life

Questions to ask

• How long might recovery take?
• What long-term effects should I know about?
• Which symptoms should I watch for?
• Which doctors should I see, and how often?

Learning about your cancer, what you can do for your health and which services exist can help you feel more in control.

People often find that when they express strong feelings, they can let go of them more easily. Talk with friends, family, other survivors or a counselor, or write your feelings down.

Many survivors want the freedom to give in to their feelings sometimes, and say “I’m having a bad cancer day”.

• Be as active as you can
• Keep your appointments and ask questions
• Set a simple daily schedule
• Try relaxation or meditation

Some people believe they got cancer because of something they did or didn’t do. Cancer can happen to anyone. No research shows that stress causes cancer.

A review of 23 controlled trials found that psychological therapies reduced fear of recurrence. The effects were small but lasted over time. Newer forms of cognitive behavioral therapy, such as those using mindfulness or acceptance, had larger effects.

Not every symptom means the cancer has come back. Symptoms can be due to other problems. Ask your team which symptoms really need a call, and keep notes for visits.

1. Pick 15 minutes at the same time each day.
2. When fear shows up at other times, note it and say, “Later.”
3. In your window, write the worries down.
4. For each one, ask: is there one small thing I can do?
5. Close the window and do something kind for yourself.

Checking your body again and again, or searching symptoms online, can bring short relief but keep fear going. A therapist can help you find a balance that works with your care plan.

Some survivors find they don’t have the energy they had before, even months later.

• Do demanding tasks when you feel most alert
• Keep a steady routine
• Use lists, a planner or voice notes
• Ask about an occupational therapist

Scars, eating changes and changes in sexuality can last after treatment. It is okay to feel sad or angry about them. Tell your doctor or nurse, and ask for a referral if they can’t help.

Let others know what you are able to do as you heal, and what not to expect. If family problems build up, a counselor who knows about life after cancer can help.

Many survivors say acting cheerful for others is a strain. Some decide to let casual friendships go and spend more time on the ones that matter.

Most survivors who are physically able to work go back to their jobs, and research shows they are as productive as other workers. Returning can help people feel they are getting their life back.

If you need changes

• Ask for changes like flexible hours or working from home
• Keep a record of each request
• Start with your supervisor, HR or union rep

Some coworkers will be a big support. Others may say the wrong thing or avoid you, often because cancer reminds them it can happen to anyone. If attitudes get in the way of your work, that is a problem for management to address.

Some groups are for one type of cancer, and some are for women or men only. They may be led by professionals or by survivors.

Some clergy are trained to help with cancer concerns such as feeling alone, fear of death, searching for meaning and doubts about faith.

Volunteering or joining clubs and social activities can help after treatment.

Free and confidential answers to cancer questions, Monday to Friday, 9 a.m. to 9 p.m. Eastern time, in English and Spanish. Live chat is at cancer.gov/contact.

The helpline is open 24 hours a day and can help you find survivor support near you.

Free counseling with oncology social workers and support groups for survivors, caregivers and loved ones.