You Are NED! Great....What is it?

by Jane Ashley

As cancer patients, we hear our fellow patients proclaim, “I’m still NED.” They seem happy to be NED so we nod in agreement and ask ourselves, “What is NED?”

You Are Ned Great What Is It

NED is the acronym for “No Evidence of Disease.”  

On a related note: It's also the name of a Band, A unique band of six gynecologic oncology surgeons from across the country, N.E.D. is taking healing and the arts to a new level. Created as a cover band to entertain their peers at a medical conference, they saw the potential to reach women in a powerful way – through music. What was started as a novelty meant to entertain, has turned into a powerful awareness movement to give a voice to women affected by gynecologic cancers. This is a very cool group of Doctors!

When treatment is completed, patients have CT scans, tumor marker tests, blood counts, bone marrow biopsies, MRIs and bone scans to determine their response to treatment. If the tests don’t show any evidence of cancer, the patient is considered NED – no evidence of disease – Memorial Sloan Kettering Cancer Center’s explanation is thoughtful and thorough. Just as with people’s skin color, there are different shades of being black, being white and being yellow. So too are there a number of responses that patients have to treatment.

“But wait a minute, I thought I could be cured of this cancer?” says the patient. There are many subtleties in this life that we live as a cancer patient/survivor. One of these subtleties is the use of the word “cure.” Although oncologists, radiation oncologists, interventional radiologists, and surgeons describe a treatment, procedure or surgery as “potentially curative,” the oncology community appears to be reluctant about using the word “cure.” 

Ned

Let’s look at a survey of  Dana-Farber oncologists who were asked questions about the word “cure” as it relates to patients and their treatment. The majority of patients (66 percent) didn’t ask their oncologist if they were cured; 81 percent of the oncologists were reluctant to deem their patients cured. 

Opinions differ when it comes to terminology. According to the National Coalition for Cancer Survivorship , “survivorship” begins the day that you are diagnosed. According to the National Cancer Institute, “survivorship” is the post-treatment period whether the patient lives 5 more years or 50 more years. In this broad definition, survivorship includes future access to healthcare, late effects of treatment, recurrences and secondary cancers plus the quality of life issues.

Given what we now know about cancer, the NCI definition seems to be a more authentic description of what being a cancer survivor really is like. 

As for me, I didn’t feel like a cancer survivor while I was in treatment for Stage IV rectal cancer – I felt like a marathon runner pacing myself to survive between biweekly chemotherapy, then daily radiation, then twice weekly radiation, then surgery resulting in a permanent colostomy, and then more biweekly chemotherapy. Nor did I feel yet like a survivor for the first year afterward. Scans every three months brought anxiety and dread. “What if?” sneaked into my thoughts when my head hit the pillow each night.

Dancing With Ned

Living the NED life requires some patience and some practice. We go from the security of treatment where we are constantly monitored to being “kicked out of the nest.” Transitioning back into normalcy is more difficult than outsiders realize. 

We may feel depressed, letdown and/or anxious over what’s next. Here’s what to expect:

• Scheduled scans. We learn that our scans sometimes say “may be suggestive of metastatic activity” or “might suggest residual disease.” They might recommend a follow-up scan, which, of course, we’re going to have anyway. Our tumor marker tests fluctuate. Early on, some of us freak out over every new ache or pain.
• Quarterly bloodwork. Depending on the kind of cancer we’ve had, there may be quarterly bloodwork to check our tumor markers and/or check our blood counts.
• Physical exams. Oncologists have the sensitive fingers as they palpate our groin and the area just above our collarbone. They are searching for swollen lymph nodes which could be an early indicator that our cancer has returned, but these swollen nodes could also be a sign of infection. Most oncologists will also palpate our right abdomen, just under the ribs, to check our livers.

Talk to your oncologist when they declare you NED about what you can do to help prevent a recurrence. The specific recommendations vary by what kind of cancer you had, but in general, here are some positive things that you can do to help you stay NED.

• Healthy eating
• Maintain a healthy weight
• Exercise daily
• Get enough sleep
• Quit smoking
• Moderate alcohol consumption
• Keep your follow-up appointments
• Eliminate stress

Being declared NED is the goal of your treatment. Early stage cancer patients are likely to remain NED.

Becoming NED is also a goal for patients with metastatic cancer. The NED status provides a much-needed treatment break and provides the patient with valuable time. Given the emerging success of new immunotherapy drugs and proton therapy, Stage IV NED patients have hope that if their cancer recurs, a new treatment option will be available, and they will become NED again.

Ned Keep Calm Carry On I Have No Evidence Of Disease

So do the Happy Dance when you reach NED status. You’ve endured a lot; pat yourself on the back because you endured and persisted.

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