NED is Not the FinishLine
- Steph
- 3 days ago
- 4 min read
For the IBC Network Foundation
They say it gently.
“No evidence of disease.”
Sometimes they smile when they say it. Sometimes you cry. Sometimes you nod like you understand exactly what that means, because you do, clinically, and also because you do not.
NED.
Three letters that sound like a victory parade. Three letters that are, in reality, a medical observation.
As a nurse practitioner, I understand the language. As a woman who has walked alongside patients with inflammatory breast cancer, I understand the silence that follows it.
NED is not a cure.
It is not a guarantee.
It is not a force field.
It is a statement about what we can see and what we cannot.
What NED Actually Means
No evidence of disease means exactly as it sounds - that on current imaging, labs, and clinical exam, there is no detectable cancer. But there is a but.
BUT, it does not mean:
There are no circulating tumor cells.
There is no microscopic disease.
There is zero recurrence risk.
The body is back to normal.
Especially in inflammatory breast cancer, an aggressive, fast moving subtype, the biology does not allow us the luxury of complacency. Surveillance remains critical. Follow up is not optional. Ongoing research is not negotiable.
NED is the absence of visible disease but it is not the absence of risk.
That difference matters.
The Emotional Whiplash of Good News
Here is the part we do not talk about enough.
The day treatment intensity slows down can feel more destabilizing than the day it started.
During active treatment, there is a rhythm:
Appointments.
Labs.
Scans.
Infusions.
Surgical plans.
Radiation schedules.
Your calendar is full. Your team is vigilant. There is movement.
Then one day, the plan shifts to surveillance.
There are ewer appointments. The stretches between scans become longer. The contact becomes less frequent.
The world celebrates while you lie awake at 2:13 a.m. wondering if that ache in your rib means something.
This is not weakness. It is neurobiology.
The body that has been in fight or flight for months, sometimes years, does not immediately downshift because imaging was clear. Cortisol levels took time to and will take equal time to readjust. The nervous system remembers and is conditioned to be on alert.
NED removes visible disease.
It does not immediately remove fear.
The Body After Treatment
Another quiet truth. NED does not mean back to baseline.
For many survivors of inflammatory breast cancer, the body carries the imprint of treatment:
Neuropathy.
Cardiotoxicity risk.
Lymphedema.
Hormonal therapy side effects.
Cognitive changes.
Profound fatigue.
You can be NED and still rebuilding.
You can be NED and still in physical therapy.
You can be NED and still on endocrine therapy, targeted therapy, or long term surveillance protocols.
The pink ribbon culture loves a finish line.
Inflammatory breast cancer survivorship looks more like a long, steady climb.
Why Language Matters
When we say cancer free, we oversimplify biology.
When we say you beat it, we unintentionally place the burden of recurrence on the patient.
When we equate NED with cure, we blur the lines between detection limits and disease behavior.
Language shapes expectations. Expectations shape support.
For aggressive subtypes like inflammatory breast cancer, accuracy is a form of advocacy. NED is a milestone - not a dismissal of future risk, not a signal to stop funding research, and it's not the end of the story.
The Research Gap After NED
One of the most overlooked realities in aggressive breast cancers is this. Survivorship research lags behind diagnosis and treatment research.
We need better data on:
Long term recurrence patterns specific to inflammatory breast cancer.
Late cardiotoxicity outcomes.
Cognitive and neurologic effects after multimodal therapy.
Mental health outcomes post treatment.
Biomarkers that could better stratify recurrence risk.
NED is not the end of scientific inquiry.
It is the beginning of a different research question. What does life look like, medically, psychologically, and biologically, after aggressive treatment?
The work of organizations like the IBC Network Foundation is vital here. Advocacy does not stop at remission. It evolves.
Survivorship deserves rigor.
Living in the In Between
There is a quiet strength required to live scan to scan.
To plan a vacation six months out while knowing there is imaging scheduled in five.
To celebrate clear results and still feel your stomach drop when the portal notification appears.
To hold joy and vigilance in the same hand.
That tension is not a character flaw.
It is the reality of living after an aggressive diagnosis.
NED is a comma. A pause in visible disease. A space for rebuilding muscle, rebuilding trust in your body, rebuilding identity.
And while we honor the relief that NED brings, because it is real and deeply earned, we must also honor the complexity that follows.
For patients, your caution is not pessimism. Your follow up appointments are not paranoia. Your questions are not overreactions.
For clinicians, precision in language matters.
For researchers, survivorship is not a soft science. It is the next frontier.
For families and friends, do not disappear when treatment ends. Support does not expire at NED.
Because no evidence of disease does not mean everything is back to normal.
And for inflammatory breast cancer survivors, continued research, continued funding, and continued vigilance are acts of hope, not fear.
NED is good news.
It just is not the whole story.
About the Author
Stephanie Pilkinton, RN, MSN, FNP-C, PMHNP-BC
Founder of Sweet Tea & Science | Nurse Practitioner | Writer | Wellness Advocate
Stephanie is a dual-certified nurse practitioner with a passion for blending evidence-based medicine with everyday life. She believes wellness should feel approachable, not overwhelming — and that a little Southern comfort and curiosity go a long way.
Follow her journey and join the conversation at Sweet Tea & Science.
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