NED (ALMOST???)

Call them back! Don't just sit around there and STEW!
It is probably some sort of scar tissue, I seem to remember someone else on here with a similar situation. I am so bad, but she had some type of lung issue from her chemo or was it pneumonia. Do you remember?
Yes, call, e-mail whatever you need to do until you understand.
When is your doctors appointment?
Go outside and walk, take a Ativan, or whatever.
I know how you feel though. I often wonder why after a good doctors appointment I cannot just relax and accept that I am NED! For example, last summer I got a call and my scans were all clear and my CEA was 0.5. I was relieved about the scans and that I was NED but the previous year my CEA was "less than" 0.5.
I was like "What, it isn't "Less Than"". Anyway, I worried and warted about it for weeks, honestly I still worry about it, but WHY? I have been told by various doctors not to worry about it.
I think cancer makes us into hypochondriacs, but hey, at least we are vigilant.
Take care!
Susan H.

Hi Joyce - First celebrate the great news. You can't help but freak out about the "lung issue", but if my experience is worth anything, it may well be meaningless.

Let me tell you my story. I have been through pretty much exactly what you are going through and have come to a new appreciation of radiology reports and what the radiologist chooses to write and what they don't. Many "degrees of freedom" there and also, I have sadly concluded some randomness.

My first CT scan was in late May 2005, following diagnosis - issue regarding liver, but no mention of lungs. Post surgery - late June 2005, another CT - at a different facility - again a possible liver issue, but no mention of lungs. Continuing saga of PET and CT scans, chemo cycles etc. CT scans in August 2005, Dec 2005 and Feb 2006 made no mention of anything associated with lungs. In March 2006 I was referred to NIH/NCI for clinical trial eval - many tests - CT showed no evidence of anything - certainly no mention of lungs. Repeat referral in late April. Docs tell me the results are the same - NED - not eligible for trial (a great reason to be not eligible).

So....... the plot thickens............

In early May I go to NIH to pick up my records to give to my oncologist since I have been "booted" back to her care. Of course I read the damn things (and make copies)! My April (not March) CT mentions "several very tiny lung nodules - eg on images X, Y and Z". Never been mentioned before (a fact that is not irrelevant is that this particular radiology report was one of those very terse ones with little detail - a poor job I have come to believe.) I COMPLETELY flip out! I call my oncologist and she tells me I should contact myresearch nurse at NIH. I do and am pretty much told to not worry my pretty little head and get a scan in a couple of months at my regular radiology facility. I was ticked cuz I really liked those people, but my pretty (or not) head wasn't going to wait a couple of months - I was PO'd and a wreck. Apparently the nurse figured this out because a few days (hellish days I might add) I got a call from the interventional radiologist there (a very nice guy, I might add) who offered to relook at all my scans, starting with the first one in May 2005.)

So, I collected all that data, took it to NIH and the radiologist reviewed it with me there and said that he saw the "tiny nodules" on the late May image, that in his opinion they meant nothing (most likely) and that they had not "progressed" from that original image to the latest one at NIH. This doc also told me that with lung "nodules" you are not out of the woods for 2 years, but if they are stable for 2 years it is accepted that they mean nothing. My oncologist told me that "one man's granuloma is another man's nodule".

I felt much better, but when I had my routine CT and PET scans at the end of June, I left a note for the radiologist explaining this tale and asking him to comment on these "nodules". He actually called me at home (a radiologist who can actually talk to a patient!) and explained that he viewed them as inconsequential (not clinically significant) features, but would comment from now on.

So, sorry to be so long winded. But I learned a whole lot about radiology reports. Even the same radiologist will write about something or not depending upon the time of day, I think. Hopefullly when something is significant they mention it - they probably have little clue what the sudden mentioning of something that has never been mentioned before can do to patients.

Off my soap box. Joyce - insist that your oncologist talk with the radiologist and if necessary get previous scans to be compared to the current scan (and that information officially reported.) I'm sure it will turn out to be ok.

Take care,
Betsy

Hi Joyce,

Given how my scans have been worded in the last 2 1/2 years, I seriously think you are dancing with NED girlfriend!!!!!!

Now don't you go doing any of that dirty dancing stuff unless of course you just have to.

Enjoy and celebrate!!!!!!!!

Lisa P.

Hi Joyce,
This is great news!! I had my first CT scan done after chemo was finished and I also have a pulmonary nodule. I also freaked out.(I found out on the written report, the ocologist said that everything in the CT scan looked normal.) A friend of mine whom is a pulmonologist assured me that 50% of the population who have not had cancer,have these nodules as a result of a respiriory infection they may or may not remember getting.
It was recommended that I have a follow-up CT in 3-6 months. Celebrate your good news!
Best wishes,
Donna