CommunitiesRenal Cell (Kidney) CancerWhat does NED mean after partial nephrectomy surgery?

What does NED mean after partial nephrectomy surgery?

LA

Community Member

17 hours ago

Post Partial Nephrectomy - NED I am 3 weeks post-op. Had Stage 1b Grade 3 Papillary Renal Cell Carcinoma. Had to advocate for myself through the shitstorm that is the healthcare system in the U.S. Daunting and tiring. I had a 2-week follow up appointment to review my surgical pathology. Still hurting, I show up at 7:40am for my appt. To be informed by the CRNP that they didn’t have my results. No one could call and tell me not to come and reschedule my appt. This was last Friday. Yesterday, Tuesday, I left a message for the oncologist asking if there were whereabouts of my results. He didn’t have the decency to phone me. He sent an email to MyChart. My markers were clear, and the mass removed stating “this is considered cured” followed by “you will need a CT Scan in 6 months just in case it comes back” (exact wording). So how am I “cured” but it might “just in case come back”? The proper verbiage is NED “No Evidence of Disease”. I’m having a difficult time cause I feel like I was treated like crap. I had to chase down my pathology report as the oncologist didn’t even have the decency to afford me a conversation where I could address questions/concerns. I had an appointment with my primary care physician today who answered all my questions and agreed I was not treated well. After my six-months scan I will be going to a new specialist. BTW the oncologist who performed my surgery is leaving the hospital where I was being cared for in two months. No excuse for his poor conduct. I’m not looking for a best friend or someone to hold hands with, just a reasonable expectation to be treated fairly. It’s bad enough being in the whirlwind of a cancer diagnosis, feeling sick, having surgery and handling all the healthcare bureaucratic crap we are saddled with. I’m having difficulty feeling “happy” about my NED result. Everyone around me says “you should be happy…”. I feel worn out and exhausted and confused and lost. And in case you didn’t know, “Achieving NED is a promising sign. It means that cancer cells are no longer detectable, but it doesn’t necessarily mean your cancer is cured. Cancer cells may still be present in low amounts.” From Healthline.com I am glad my markers are clean and I hope for my future scans, bloodwork and x-rays to be as well. But right now I don’t feel like jumping up-and-down.

1 comment
Comment
CA

Community Member

12 hours ago

NED stands for "No Evidence of Disease," which means that current tests and scans cannot detect any cancer cells in the body. The feelings of exhaustion and confusion after such a difficult experience with the healthcare system are completely understandable, and it's valid to feel worn out even with good news. Many patients find that celebrating medical milestones takes time, especially after navigating poor communication and having to advocate so hard for proper care - focusing on healing both physically and emotionally is important right now.

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