Understanding No Evidence of Disease (NED) in Breast Cancer

No evidence of disease (NED) is the term that medical professionals use when there is no evidence of cancer after treatment.

It means the same thing as complete remission or complete response. Unfortunately, NED does not mean that cancer is cured. With most cancers, there is a chance that some remaining cancer cells could cause a recurrence (return of cancer) in the future.

Achieving NED means that the cancer treatments were effective, and many patients celebrate “being NED.” Even after achieving complete remission, many people have to cope with fears about recurrence and potential survivor guilt. Additionally, chemotherapy and radiation can have long-term side effects.

This article will discuss what it means to be NED after cancer treatment, what it means to be "cured" of cancer, what allows cancer to recur, and how to cope with life after cancer.

Levels of Disease

The National Cancer Institute defines remission as a “decrease in or disappearance of signs and symptoms of cancer." There are two different categories for cancer remission.

• Partial remission: Only some of the cancer signs and symptoms have disappeared.
• Complete remission: All of the cancer signs and symptoms are gone.

Complete remission is the same as NED. Complete remission means that there is no longer evidence of cancer in your body based on:

• Signs or symptoms of cancer
• Blood tests such as tumor markers
• Imaging studies including computed tomography (CT), magnetic resonance imaging (MRI), bone scans, and positron emission tomography (PET) scans

Providers rarely use the word “cured” when describing cancer. Years or decades after treatment, you still may have some cancer cells inside your body that could potentially allow cancer to return.  

Recurrence and Cancer Stage

Depending on how long it has been since completing treatment, the return of cancer is classified as early recurrence or late recurrence.

The stage of your breast cancer plays a role in your risk of recurrence:

• Stage 0 breast cancers (noninvasive breast cancer) have not spread to surrounding areas. These are typically treated with surgery, and sometimes also radiation. While your healthcare team will recommend ongoing monitoring, these progress to NED fairly quickly. 
• Metastatic cancers, especially estrogen receptor (ER) positive tumors, may recur at any time. In fact, ER-positive cancers have been shown to recur at any time from less than five years to more than 20 years later.

NED in Metastatic Breast Cancer

Metastatic breast cancer typically requires lifelong treatment to control the disease. Your healthcare team will discuss different treatment options depending on the type of breast cancer you have. 

A 2015 study showed that those who achieved NED had “significantly prolonged survival” compared to those who did not.

In that same study, the drug Herceptin (trastuzumab) showed a high likelihood of progression-free survival. That means that the cancer was stable and did not worsen. Herceptin is often used in cancers that are HER2-positive.

Why Healthcare Providers Don't Say Cancer Is "Cured"

Healthcare providers rarely use the term "cure" when talking about solid tumors—even if it seems very likely your cancer will never come back. Even after treatment, it is impossible to know if there are isolated tumor cells or micrometastases present in your body.

Cancer cells can grow into nearby structures of the body, or cells can break off from the original tumor and spread to other areas of the body. Often these invading cancer cells are either single cells or very small groups that are too small to be found by currently available tests.

While it may be uncomfortable to think about cancer cells remaining in your body, it can be comforting to know that part of the job of your immune system is to remove damaged cells. Your immune system is constantly working to destroy or limit cancer cells.

Durable Response

Some people with metastatic cancer who have been treated with immunotherapy drugs appear to have what is called a "durable response." Although the term durable response is being used more frequently, medical providers have not agreed on a universal definition.

Generally, durable response refers to the benefits of some immunotherapy drugs that persist after treatment has stopped. It will be some time before experts know whether or not these drugs provide long-term remission for people with advanced cancer.

Recurrence

Researchers know how breast cancer spreads, but they do not know exactly why some cancers return years later.

Some cancer cells might be able to hide from the immune system or from treatment or may multiply so quickly that the immune system can't keep up.

Zometa

Zometa (zoledronic acid) is a bisphosphonate medication used to treat osteoporosis and bone metastasis (cancer spreading to and weakening the bones). It also helps strengthen bones weakened by cancer treatments.

Zometa has been studied as part of adjuvant therapy. Adjuvant therapy is given after the main cancer treatment to help prevent cancer from returning.

A 2013 study found that Zometa helps improve survival rates in women with early-stage HER-positive breast cancer. Zometa also may reduce the risk of cancer spreading to the bones by helping change the environment of the bone to prevent cancer from growing there. Multiple studies have also shown that Zometa, along with other treatments, helps prevent breast cancer from returning.

Concerns

Hearing that you have achieved NED after treatment is positive news. Many people find that they face complicated feelings in this new phase of their cancer journey. Those around you may go back to life as usual while you are coping with lingering side effects, uncertainty, and major life changes.

One option is to find a local or online support group with members who are going through a similar experience.

If your feelings are too overwhelming or interfere with your daily life, seeking the help of a therapist may be beneficial. Your healthcare team can recommend a therapist with experience treating people who have had cancer. 

Late Effects of Cancer Treatment

The majority of people who are NED are still coping with some side effects from their cancer treatments. Symptoms, such as cancer fatigue, pain, hot flashes, and more, can linger far past the last dose of chemotherapy or radiation.

There are options to help with these issues that continue even after your cancer treatment is complete. Some people benefit from cancer rehabilitation to help manage the late effects of cancer treatment.

Tell your healthcare providers if any symptoms are lingering or if any new ones arise.

Fear of Recurrence

The fear of recurrence is very real whether you had a very early-stage or advanced-stage cancer. Life is much different than it was before cancer. What you once would have considered a mild headache may cause you to fear that cancer is reappearing in your brain. A tickle in your throat from seasonal allergies may prompt worry that cancer has returned to your lungs.

There is a natural feeling about overcoming any type of adversity: I cannot get too comfortable with my new reality because it may not last. Some people find it helpful to talk with an oncology counselor to develop ways to cope with their complicated feelings.

Survivor Guilt

According to researchers from the American Cancer Society, the survival rate from breast cancer is improving over time. The identification and treatment of early-stage disease are reducing the risk of recurrence. Unfortunately, recurrences still occur, and they are unpredictable.

If you are NED, you may wonder why your treatment worked or why you have a less aggressive cancer than someone else. Many people with breast cancer compare themselves with others. Guilt is a feeling that is frequently reported. 

Complicated or overwhelming feelings can come up in a variety of settings and relationships. Surrounding yourself with others who have had cancer can give you much-needed support, but it also means you may lose friends if their cancer is fatal.

It is important to acknowledge how you are feeling and to get to a place where you can accept that there is no answer to Why? Reach out to your healthcare team if you are having a hard time coping, no matter how long it has been since your diagnosis or treatment.

Life Being NED

Your healthcare team, including your oncologist and your primary care provider, can help you find the information you need for living your life after being told your cancer is no longer detectable. 

One option is to find a cancer survivorship program. These often offer psychological and medical support. There are no rules about claiming your status as a cancer survivor, so make the decision that is right for you. 

There are lifestyle strategies that can help you in your new chapter:

• 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: If you have sleep difficulties, talk to your healthcare provider. Some studies suggest that breast cancer may be more likely to recur in women who have insomnia.
• Find ways to reduce stress: It has been suggested that stress can play a role in some people going from NED to recurrence.
• Journaling: There are many benefits to journaling, including stress relief, clarifying thoughts, chronicling your journey, and even making sense of everything that has happened.

Summary

Being told by your healthcare team that you have no evidence of disease (NED) is an important milestone to celebrate. Unfortunately, there is a risk that your cancer may return in the future. There are also complicated health and emotional aftereffects that result from cancer treatments. Your healthcare team is available to help you as you move into the next phase of your life.

A Word From Verywell

NED is a milestone, for sure, and one worth celebrating. It is understandable if you get overwhelmed by all you have been through and the possibilities of what could happen in the future. However, while you have faced challenges, you now have new skills to take into the future.

Try making a list of all you have gained from your experience. Remember that it took courage for you to get to where you are now. While everyone is different, many survivors say that their disease led to personal growth.