The term “no evidence of disease” (NED) is often used with cancer when there is no physical evidence of the disease on examination or imaging tests after treatment. The term means the same thing as complete remission or complete response. NED does not, however, mean that a cancer is cured, and, with most cancers, there is a chance the cancer could recur or relapse at a later date.
Certainly, being NED, as the term is often used, is very positive, and means that the treatments used were effective, if not just temporarily. Since the recurrence of cancer, and metastases, are responsible for the majority of cancer deaths, there is currently a lot of research focusing on how to keep a cancer NED.
It’s important to note that people with cancer who are NED need tremendous support. Not only do many people who have achieved a complete remission need to cope with the fear of recurrence and “survivor guilt,” but late effects of cancer treatment can sometimes significantly reduce quality of life.
No evidence of disease (NED) is a term used when examinations and tests can find no cancer in someone who has been treated for cancer. People may be NED after an early stage cancer is treated, or may be NED even with metastatic cancer. With metastatic cancer, however, the disease will almost inevitably recur at some time.
NED describes a point in time—where you are today—having no signs or symptoms of cancer nor any evidence of cancer on blood tests such as tumor marker tests or imaging methods available at this time, such as CT scans, MRI, bone scans, or PET scans. NED may be temporary, or it could be permanent.
When speaking of breast cancer, the term no evidence of disease (NED) does not mean the disease had been cured. In fact, and especially with estrogen-receptor positive tumors, the disease may recur many years, or even decades, after it appears to have been eradicated.
NED vs Cure
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 mostly remain reserved for only the smallest “pre” cancers or some childhood blood-related cancers. Very recently, however, some people with stage 4 cancer who have been treated with immunotherapy drugs appear to have what is being called a “durable response.” We also know that, unlike treatments such as chemotherapy, the benefits of some immunotherapy drugs persist after treatment has been stopped. It will be some time before we know whether or not these drugs are actually curing some people with advanced cancer.
NED with Metastatic Breast Cancer
NED can occur in people with metastatic cancer, not just those who have early stage potentially curable cancers. With breast cancer, achieving NED does not mean cure, but is associated with longer survival than that of people who are never NED with metastatic breast cancer.
Findings you may hear to describe NED with metastatic cancer include a “complete metabolic response” on a PET scan, or “sclerotic healing of bone metastases” on a CT or MRI in people who had bone metastases in the past.
In one study looking at women with metastatic breast cancer (MBC), the median survival (the time at which 50 percent of people have died and 50 percent of people are still alive) for those who were NED was 102 months and the 5-year progression free survival rate was 40 percent.
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.
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 odd, 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. Why?
Late Effects of Cancer Treatment
The majority of people who are NED 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.
Fear of Recurrence
Then come the fears. The fear of 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. Some people find it helpful to talk with an oncology counselor to develop ways to best cope with this fear.
From another angle, there are yet other thoughts you may be coping with when you get to NED. Many people are involved in local or online support groups with others facing breast cancer. and People are often 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 heart-wrenching guilt that hits when you survive, but your 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.
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 post-traumatic growth. In other words, cancer really can change people for the better!