NED - Now What?

Living With Lung Cancer, Now No Evidence of Disease – Now What?

Reviewed by: HU Medical Review Board | Last reviewed: April 2024 | Last updated: April 2024

Cancer remission is often called “no evidence of disease” (NED). This means that scans and tests do not detect any cancer in the body. Reaching this point can bring a sense of hope, relief, and happiness. But it can also come with new worries and fears. About 7 out of 10 people who reach NED experience depression at some point.1,2

Every person has a different experience after reaching NED. Coping with changes and managing emotions can take time. Asking for help and support from other people is important. Talk to your doctor and loved ones about what you are feeling.1,3

Health problems after treatment

After months or years of treatments, appointments, and tests, reaching NED seems like it should resolve all issues. But at this point, it is common to feel emotions that you may have put aside during treatment. Feelings of exhaustion, sadness, or anxiety are common. Facing these emotions and giving yourself time to adjust is important.4

Along with emotional challenges, some cancer treatments can cause health problems later in life. Many people experience long-term side effects like:3,5

  • Fatigue
  • Shortness of breath
  • Memory changes
  • Swelling
  • Bladder or bowel control problems
  • Pain
  • Weight changes

Some of these side effects may not show up until years after treatment. Talk to your doctors about your risk for long-term health problems. Tell them about any new symptoms or problems you experience.4

Changing routine and support

After cancer treatment ends, your daily life may change significantly. You may find yourself adjusting to a new “normal.” Life may have a different meaning now, and you may have new priorities.4

During treatment, you may have had a lot of support from those around you. You were likely going to many appointments and seeing doctors often. Family and friends may have come around often. A lot of the focus was on treating your lung cancer.4,5

After treatment, this focus and support may not feel as strong. You may have more free time or return to tasks that you did before treatment. You may visit your doctor only every few months. Relationships with friends, family, and coworkers may change. These adjustments take time to understand and get used to.2,4

Some people welcome these changes. They may feel relieved to have time for other activities and attract less attention. But for many people, these changes can feel like a loss of purpose and support. It is common to feel a sense of “now what?”3-5

Coping with uncertainty and fear

One common worry after reaching NED is about the cancer coming back, called recurrence. You may feel like you are not fighting the cancer anymore. This can cause an intense fear of recurrence.2,4

Doctors cannot know with certainty that there is absolutely no cancer in your body. It is possible that the signs are too small to detect. This uncertainty can cause a lot of anxiety. After lung cancer, you may be very aware of new pain in your body. You may have trouble sleeping or making decisions.1,5

Fear and uncertainty often decrease over time, and you may think about cancer less often. But worries can always arise, especially around certain events and anniversaries. Here are a few tips for dealing with fear and uncertainty after reaching NED.4

Acknowledge your emotions

A positive outlook may help you manage your burdens. But an optimistic attitude is not always achievable. It is not possible to be positive all the time. Let yourself feel your emotions. Do not let others shame you for feeling sad, angry, or anxious.4

Remember that negative emotions are normal. Ignoring them can only make them worse. Keeping fear locked inside can make it persist or get bigger. When you are up to it, you can work toward developing a positive attitude that will grow with time.4

Stay informed

Knowledge can help you feel prepared and in control. Learn about the signs and symptoms of lung cancer recurrence. Ask your doctor what care is best for you now. Work with your doctor to make a post-treatment or survivorship care plan, which can include:3-5

  • Suggested schedule for follow-up tests
  • Lists of long-term side effects and what to watch out for
  • Schedule for long-term side effect testing
  • Suggestions for ways to stay healthy
  • Copies of all your medical records

Change your focus

You may now have energy and time to focus on new things. Try to use this energy and time on your health and wellness. This may involve:4,5

  • Making healthy diet changes
  • Getting regular exercise
  • Enjoying hobbies
  • Quitting smoking
  • Trying new activities
  • Finding ways to relax

Practice stress-relief techniques

Unfortunately, you have no control over cancer recurrence. This can be a stressful and hard reality to accept. Try to find ways to reduce stress. Many effective strategies guide you to focus on the present instead of an uncertain future. These methods include:4

Bring it out into the open

Talking about your fear, uncertainty, and other emotions can help you process them. Find a friend, support group, or counselor you trust. Expressing strong feelings may help you let go of them.4

Thinking and talking about what you are feeling can be hard, though. If you are struggling to do so, writing about it in a journal is a more personal option.4

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