Living With Lung Cancer, Now No Evidence of Disease - Now What?
Last updated: February 2023
NED – “no evidence of disease” – is the goal when someone is going through treatment for lung cancer. Doctors rarely use the word “cure” when it comes to cancer. NED is the term used to describe when a person has no evidence of lung cancer on any scans or tests.
Coping with no evidence of disease
Many people who are NED after lung cancer may be coping with significant side effects from the treatment they received, including fatigue or shortness of breath. The treatments may be done, but the effects linger.
Reaching NED during lung cancer treatment
During treatment, you’re in an active state of fighting for your life. You’re going to scheduled treatments, and your doctors are closely following your progress. Family and friends are rallied around you for support, and all your energy has a point of focus.
Experiencing shifts in support after NED
Once someone reaches NED in their lung cancer journey, some people feel a letdown because the focus and support appear to come to a halt. It may seem like everyone is going back to their lives, and you are left with a big feeling of, “now what?”
Side effects after treatment
After months of (sometimes grueling) treatments, numerous doctors appointments, and countless tests, as well as all the soul-searching and emotional rollercoaster from being on this lung cancer journey, it may seem like the pronouncement of NED is the balm that would solve all problems. However, it’s not that easy.
Fear of lung cancer recurrence after NED
And then there’s the fear. Once you’ve had cancer, there’s always a chance of it recurring. Even the proclamation of NED isn’t fool-proof: while there are no signs of cancer on the scans, doctors can’t know for sure that there isn’t a micro-metastasis too small to be seen that may be somewhere in your body.
Any scan or test may bring scanxiety. After lung cancer, you may be hyper-vigilant about any new twinge of pain in your body, wondering if it might be a sign of recurrence. If you get a cough from a cold virus, your thoughts may first wonder if it’s lung cancer again. Fear of lung cancer recurring is real and may change your perspective on everything regarding your health.
Fear is a natural reaction to a scary situation, and lung cancer can be frightening. Emotions are our bodies way of processing information, and when we allow them to flow, they can be “e-motion” or “energy in motion.” Some tips to dealing with the fear of lung cancer recurrence after reaching no evidence of disease include:
Acknowledge the fear
Recognize what you’re feeling and give it some space. Keeping fear locked inside can make it persist or get bigger.
Bring it out into the open
by talking with a friend, your support group, a counselor, or even writing about it in a journal. Shining light on your fear keeps it from being overwhelming.
Know the signs
Knowledge can bring peace of mind and help you feel more prepared. Learn about the signs and symptoms of a recurrence and what to look for. Ask your doctor what symptoms you should bring to his or her attention.
Change your focus
Experts say our brains can’t focus on fear and gratitude at the same time, so shifting your attention to all that you are grateful for can help ease your fear.
Try mind-body techniques for stress relief
Many of the complementary therapies like meditation, massage, acupuncture Tai Chi, or Qigong can help reduce stress and anxiety.
Beside manner matters! What has your experience been?