New terminology for NED?

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Hi all, it’s been a long time since I visited these boards and wanted to ask a quick question if that’s ok. 

I’ve just had the results of a CT scan, after 6.5 years of being NED the oncology letter reads “no measurable disease”. I was dx in Nov 2017 with stage 2b squamous cell LC and had an upper right sleeve lobectomy with 2 lymph nodes affected also. Clear margins. 

Followed by 3 rounds of adjuvant chemo, Cisplatin/Vinorelbine which had to be stopped due to sepsis. 

Every CT since August 2018 has said no evidence of disease on the letter and my oncologists words were “there’s nothing there”. I guess I’m worrying just about the terminology, does this mean there is something there but they can’t measure it or that the machine doesn’t detect anything? 

Would be very grateful for any replies, I have spoken to the helpline but the guy was getting confused and thought I had breast cancer, spelt my name wrong and kept me talking for 20 minutes about how I felt when I only wanted a quick answer! 

I thought it best to ask the experts……the ones coping with this disease and I wish you all so many good wishes on this horrible journey. Thank you, 

  • Hello anniekins,

    I'm 10 years out from a right pneumonectomy and the same adjuvant chemotherapy as yours.

    From what you say it sounds very much like terminology to me and "no measurable disease" sounds like excellent news. I've had similar confusion on occasions and have had to ask for clarification a few times now.

    I'm sure you're still OK this time round and all I can suggest is that you contact your consultant (or whoever is responsible for your care) to ask exactly what "no measurable disease" actually means. I do believe it is exactly the same as no evidence of disease.

    I'm sure you're OK, and hope you can get some reassurance very soon.

    Best wishes,

    Derek.

    Made in 1956. Tested to destruction.
  • All these different phrases worry us!  I have been discharged back to the care of my GP.  The final report to my GP said I have "no evidence of recurrence" and no further surveillance is needed."  I would prefer No Evidence of Disease too, but I guess that technically that might not be correct since we bear the scars of surgery and radiotherapy.  Sending you very good wishes too - what your consultant says sounds very hopeful to me.