Understanding No Evidence of Disease (NED)

NED vs Cure and Coping

road sign which says "surviving cancer"
What exactly does it mean to be NED - no evidence of disease?. Istockphoto.com/Stock Photo©MCCAIG

You may have heard someone mention they are NED, or your doctor may have used this term to describe your cancer. What does it mean if there is "no evidence of disease" with your cancer? When is this term usually used? And how does it compare with other terms such as remission and complete response?

No Evidence of Disease (NED): Definition

No evidence of disease (NED) is a term that is used when examinations and tests can find no cancer in a person who has been treated for cancer.

NED describes a point in time—where you are today—having no signs or symptoms of cancer nor any evidence of cancer on imaging methods available at this time. NED may be temporary, or it could be permanent.

When speaking of breast cancer, the term no evidence of disease (NED) does not mean that the disease had been cured, since recurrence can't entirely be ruled out. To be classified as NED means there is no evidence of any cancer present that can be detected by studies such as blood tumor markers, CT, MRI, bone or PET scans.

Does NED Mean You're Cured?

Doctors rarely use the term "cure' when talking about solid tumors—even if there is a 99 percent likelihood that a cancer will never come back. It is impossible to know if there are "micrometastases" present in your body—that is, metastases which are too small to be seen on imaging studies.

We know a bit about how breast cancer spreads, but we don't know exactly why some cancers return (recur) years, or even decades later.

 There are theories that describe dormant cells or stem cells having the ability to hide and evade treatment, but as yet we aren't entirely sure. Until then it's likely that the word "cure' will remain reserved for only the smallest "pre" cancers or some childhood blood-related cancers.

Other Terms Which Mean NED and More

You've probably heard a number of different terms that talk about the progress of a cancer.

Some of these terms mean much the same thing but tend to be used more for one cancer or another. Terms that are synonymous with NED include:

  • Complete remission
  • Complete response

If a cancer recurs after a complete remission (NED) it would be called a relapse or a recurrence.

Coping

Someone who hasn't lived with cancer may not understand why there would be a heading that says "coping with NED." Shouldn't you be totally thrilled?

Yet being NED can be a frightening place. While you're in active treatment, you are usually seen by your doctor often, and family and friends are near. It may sound a little funny, but many people feel a bit depressed when they reach this step. It may seem like everyone you know is going back to their life before your cancer but you.

On top of that, the majority of people are still coping with some side effects from the treatments it took to get to NED. Symptoms such as that annoying cancer fatigue, pain, hot flashes, and more linger far past the last dose of chemo or radiation.

Then come the fears. The fear of cancer recurrence is very real and it doesn't matter if you had a very early stage cancer or advanced cancer. Life is different than before cancer. What once was a mild headache, you now fear is cancer reappearing in your brain.

What was once a tickle in your throat from seasonal allergies, you now fear is cancer returning in your lungs. Fear of recurrence is universal. Talk to your doctor about this fear, and check out these tips on coping with the fear of recurrence.

From another angle, there are yet other thoughts you may be coping with when you get to NED. Many of us are involved in local or online support groups with others facing breast cancer. Many people are surprised after being bathed in pink ribbons to realize that the mortality rate from breast cancer really hasn't changed that much. Certainly, the treatment options for early-stage disease are reducing the risk of recurrence, but recurrences still occur.

When distant recurrences happen (metastatic or stage 4 breast cancer) there is no longer a possibility of a cure. What this means is that if you have people in your support group facing metastatic breast cancer, you will lose friends. The term survivor guilt has been coined to describe this sometimes heartwrenching guilt that hits us when we survive, but our friends and loved ones do not.

New Light Shed on NED and Breast Cancer Recurrence

With the recommendation of a new medication for some people with early-stage breast in 2017 comes a slightly better understanding of how breast cancer cells may hide and then begin to grow again many years later. For women who have early stage postmenopausal estrogen receptor-positive breast cancer, the bisphosphonate medication Zometa (zoledronic acid) is now recommended as adjuvant therapy. This medication which has been used for osteoporosis and bone metastases appears to affect the microenvironment in bone. The microenvironment is the characteristics of tissue surrounding a cancer. As such it may reduce the risk of bone metastases occurring in the first place.

These findings have led researchers to question whether dormant breast cancer cells (when it is NED) hang out in the bone marrow. When the microenvironment changes, for some reason, these cells again begin to grow. Since 90 percent of breast cancer deaths are related to metastases, research into this mechanism is critically important.

Next Steps

We are finally beginning to address "survivorship needs," but we're not there yet. Some cancer centers "cast you off" with a survivorship plan, or offer "cancer rehabilitation" programs. Yet often it feels more like "be happy—you lived—have a good life!"

If you are NED with breast cancer, check out the symptoms and learn more about breast cancer recurrence. You may wonder why you aren't scheduled for regular imaging exams (such as PET scans) as people are with some cancers. The reason is that even though these scans may show a recurrence slightly earlier than would be possible based on symptoms alone, there is no evidence that survival is improved by detecting signs of a recurrence before any symptoms are present.

Enjoy a healthy lifestyle. There is some evidence that eating a healthy diet as well as exercising regularly may lower the risk of recurrence. Get enough sleep, and if you suffer from sleep difficulties, talk to your doctor. Studies suggest that breast cancer may be more likely to recur in women who suffer from insomnia. And find ways to reduce stress. Like insomnia, studies tell us that stress can play a role in some people going from NED to recurrence. Consider journaling. And, on a positive note, think of all you have gained in your experience. We are learning that in addition to stress, going through cancer can lead to posttraumatic growth. In other words, cancer really can change people for the better!

Sources:

Memorial Sloan Kettering Cancer Center. What is “Cure?” https://www.mskcc.org/pediatrics/cancer-care/types/neuroblastoma/what-cure

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