NED?

[Eileen4]

Hi everyone,

I don't post much but do read most of the posts in this thread. I hope this finds everyone well.

I've noticed that many of you report "NED" results in your follow-up scans and I know it means "No Evidence of Disease". I've had 2 scans since surgery and have yet to see NED. I simply got "stable" on my last CT report, i.e. the 2nd 3-monthly scan showed no change from the first, which showed nodular opacity, so now I find myself worrying sick about this.

Anyone care to offer their thoughts? Also, is NED a standard term used on radiology reports from CT scans?

Thanks you!

[enyaw061032]

Eileen, I may not be right about this, but I don't think the report actually SAYS NED, but rather based on what the report says, we write NED as our interpretation. I would think stable means the same thing?

If I am not right about this, others who are much more knowledgeable than I am will correct this.

Barb

[Debi]

Eileen,

I'm with Barb - I don't think that this is actually put in a report but rather is a phrase that people use. Again, I'm not actually sure, I haven't seen many of my reports, and the ones I did see were a few years back.

Where the heck is Nonni (Pam)? I know that SHE always peeks at her reports....

[Eileen4]

Thanks for responding, guys

I think I'm beginning to worry too much but just don't know how to stop it and just live one l day at a time. Any tips would be appreciated.

[Kasey]

How about filling out a Profile, so we can have a better idea of what type of LC you were treated for and just what the tx was, Eileen. We may be able to respond better. My reports do say something like there is no evidence of metastatic disease. I assume that means due to the rad and chemo and surgery I had there is nothing there any more. Stable may mean that there is evidence of cancer present BUT it has not progressed. But you mentioned surgery, so perhaps your report means just what mine does......don't know.

At any rate, the news is good for you, RIGHT? So congrats and I think you just have to wait it out a little to be able to enjoy life day by day. It did take me some time to stop obsessing every minute of every day. I WILL happen though.

Kasey

[Eileen4]

Thanks Kasey and Katie.

I'm working on a profile today and will get it up asap. (You're right--I need one up, so you know where I'm at with this.)

[Eileen4]

(OK, I added information to my profile, under signature, so checking if it worked with this post.)

I'm not 100% sure of what these scans mean and find myself worrying constantly about it.

[Debi]

Eileen,

Okay, I googled and I really don't think you have anything to worry about. From my 'take' on it, this looks like it may be a result from your surgery. Below is the definition of linear opacity- no surprise here. By saying it is stable, that is a very good thing because they are probably also assuming it is from your surgery, but watching just the same. (Of course I'm not a doctor. Have you asked yours exactly what it means?)

Irregular linear opacity

a linear opacity of irregular thickness varying from 1 to 3 mm. It may be intralobular or extend through several lobules. It usually reflects atelectasis or scarring.

atelectasis: loss of lung volume with reduced inflation of a segment or a lobe.

[Eileen4]

Thanks for googling and posting this, Debi. I really appreciate it. They told me it could be scarring from the surgery and will watch it.

You know, I was feeling pretty damned great following the surgery and went off on my merry way for my first 4-month follow-up scan, feeling nothing but positive. While I was awaiting the result of that, something triggered in me. An overwhelming, all-consuming fear, and I haven't been the same since. I'm jumping at shadows and hate that I'm this way. I believe that thinking positively is all-important in this battle; right now, I'm the antithesis to that and it's depressing me no end. How do you all hang on to hope?

[Kasey]

It's difficult to hang onto hope sometimes, Eileen. But I think most of us just keep putting one foot in front of the other and forge ahead. I guess this is part of the 'new normal' we keep hearing so much about. Stinks though, doesn't it?

Kasey

[Eileen4]

Yes, it does.

[enyaw061032]

Eileen, you are very fortunate that your lung cancer was stage la with no other involvement, and therefore you could and did have surgery to remove the cancer.

Your reports sound very good, and of course you will more than likely see words that ultimately mean scarring for some time because of the surgery you went through.

Keep on keeping on.

Barb

[Welthy]

Wait a minute -- am I having a really bad day or do others not see Eileen's profile either? I'm confused (not something unusual.)

Welthy

[nonni]

Hi Eileen...I am 2 and 1/2 years out from surgery...and it still frustrates me that I had LC..I don't think it will ever leave my mind...but it does get better...I don't want to live the 'new normal"...I want to think of myself living 'normal"...I refuse to let it run my life for the rest of my life...just like the saying on here is..."it is what it is"...I have a lot of faith in God...and I give it all to him

As far as NED...Debi knows me all to well...and she is right...I do peek at reports...but only sometimes.. ...I have to say ..I have never actually seen the letters...N E D...but all my scans have been OK so I am taking forgranted that I'm OK...I'm sure my doctors would have told me otherwise...and I ain't asking..

Eileen ..it sounds like you are doing Ok...except for the bogger in your head...maybe ask the doc for an anti depression pill...Me loves my xanax....

Hang in there and take care...hope it gets better for you real soon...I do know that some of us handle it better than others...I'm usually Ok except around scan times or a new ache or pain...than I get paranoid...but I still try to live 'normal'...I want no parts of the 'new normal'

God Bless you and all of us...hugs..PamS.

[Eileen4]

Again, thank you all for posting. I was scanning the board the other night and read from a poster who was better able to describe what I'm trying to say. She referred to it as "delayed stress" I think, and I really feel she hit the nail on the head. When I didn't know what was up, what stage, etc., I was in "fighting mode" and all my energy went into that. Then I got good results and felt terrific for a while. Then came the scan and back came the fear and the worry about if it will come back. I'm definitely going to have to work on myself. And Pam, it's good to know that I'm not the only one who gets paranoid and scared around scan time.

God bless and hugs back

Eileen

[DrWest]

Following surgery or other treatments like chemo and radiation with curative intent, scans often say that the scan images are stable, often with findings consistent with post-treatment effects. In that setting, there is often scarring that leads to long-term scarring and other things that are "abnormal", but that's perfectly fine if that never changes. Most radiologists don't say NED or "no evidence of disease" in their reports, even when the scans look favorable. Sometimes they do, but they can be pretty conservative, and they may not offer much interpreting. I see plenty of very encouraging reports that don't say NED.

[Eileen4]

Thank you, Dr. West. As always, much appreciated!

[Tiny]

Eileen-

I haven't been on the boards for a while, but I am one of the original posters and feel privileged to say I am still here five years later and enjoying life to the fullest (right up to a short while before each scan and until I know the results!!! ) So your feelings are totally normal. I must say the anxiety has lessened with the passage of time, but I still experience it at moments.

Sending you my best.

[Eileen4]

Tiny,

Thank you for your heartening post! Glad to know that you are enjoying life to the fullest. Can I tell you what an inspiration folks like you are to "newbies" like me, and how much I enjoyed seeing you in that picture, on a zipline, no less? Good for you--keep on zipping along, and I hope I'll be right there beside you some day

Best,

Eileen