When They Tell You NED...
Last updated: February 2023
NED, or No Evidence of Disease. Aren't those the most wonderful words you have ever seen? It doesn't really matter where your cancer is or where it came from because when you hear those words you breathe a deep breath of relief and happily dance out the doctor's office. But what does it really mean? Does it mean you are done with cancer and can go about life as normal? For me, and most cancer patients, the answer is NO.
The realities of NED
Whether it is surgery, radiation, chemotherapy, or immunotherapy that you have been through, at the end you will be scanned again and may have those words appear on your radiology report. But the truth is, you are still a cancer patient.
The chances of cancer showing up again can be sky high. You must still keep the thought in your head that you have cancer and that is for your own sake. You still need to see your medical team frequently for scans and X-rays to make sure that your disease has not reared its ugly head again. I have friends who have been NED for over 13 years, but they are still considered cancer patients. Meaning, scans every three to six months, frequent doctor visits, etc.
My NED ups and downs
Immediately after my surgery to remove both lobes of my left lung and many lymph nodes, I was told I was NED. I cried from excitement until my oncologist told me "hold on, don't get too excited." He explained to me that the probability of the cancer reappearing was greater than 50% and boy was he right. I endured chemotherapy continuously asking myself why am I going through these horrible treatments if there is no cancer.
Well, 4 months after, my cancer reappeared in my lymph nodes. I continued treatment and approximately one year later tumors appeared in my right (and only) lung. So now my treatments are hopefully to reduce the tumors but I call it a win/win if the tumors stay the same size - which is what my life has been for 2.5 years now.
Celebrate and stay diligent
Remember, in the beginning, I said I know people who have gone MANY years without progression or reappearance of their cancer so it certainly is a goal to reach for. Why else would we go through the motions of enduring treatment - we want eternal life or a few more years!
If you are currently NED, I say, CONGRATULATIONS!!! Party till the cows fly over the moon. But, please, do not become comfortable in the fact that you no longer have cancer. It is actually quite the opposite. Because you had cancer in the past you are more susceptible for a recurrence. So I beg you to be diligent in your follow-up care. If you have an oncologist who tells you scans are no longer needed, RUN and find another oncologist. Find one who will continue to monitor you and make sure that you can continue to live your best life.
Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed.
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