Hey all, long time no write.

Some may know some may not but ooo way back in april i got my first negative pet scan result and was over the moon (of course) well i went to see my ENT Dr and talked over the results she did the usual scope ext and liked what she saw so much she said she didnt need to see me for 3 months (i was thrilled i know the longer the time the better we are) then i get a call from her she had just recieved a copy of my scan she said she had reviwed it and wasnt happy, that i had a patch on the left side of my mouth and face, and although it looked like it could be pooling, the dye had just been attracted to saliva but there was still a chance that it was something more.

I am now waiting on the date they want me to get another pet scan done, the thinking is if it looks the same as the last one then its something more if its either diferent or isnt there then it's nothing to worry about....man these are going to be a couple of long months for me, i am of course very worried. Did any one else get and thing like that?

thanks for reading Debz

You are actually talking about a false positive, not a false negative. These are very common, and there are lots of posts here about this. I had two nodes and some other tissues light up on my first scan, which had me very concerned, but the docs said not to worry. Radiation does a lot of damage to tissue that shows up on PET, even though it is not malignant.

My doctors prefer the clinical examination. I see each of my three docs (MO, RO, ENT/Surgical Oncologist) every 8 - 12 weeks. The longest I go without seeing one, because of the rotation, is 6- 7 weeks.

I understand your apprehension, but there are lots of false positives. Hang in there!!!

Debz,

The waiting and uncertainty are very painful and we all had to go thru this. I hope all turns out for the good.

Geez Deb, you had that scan April what and the doctor is just reading the results NOW? It's almost June. Where have they been for the last month+? I think I'd raise some hell.

Yes, false postives happen all the time and here's hoping that is what yours is. Considering their screw up on giving you the results, I'd push to get the scan as soon as possible or at least another appointment with the doctor for a visual scan.

Take care,
Eileen

Debz,

I have had 2 post treatment pet scans, one at 3 months and 1 at 8 months. The first one showed uptake and they did a biopsy which came back negative. The second pet scan came back with uptake in the same areas, but at a lessor uptake value. My ENT did not seem overly concerned and said he will watch it clinically. From what I learned it could still be to early to get an all clear pet scan, and there could be a lot of scar tissue and healing still going on in there.

I had a scan the 22nd of April because an earlier one showed positive. The biopsy proved it to be a false positive. I hope you get the same news.

Hey everyone thanks so much for your replys...

Jeff thanks for replying, but no i was talking about a false negative, my Rad Dr and the Dr who reads the films both gave me the all clear with a negative scan result, then my ENT finaly got a copy of my films and didnt like what she saw she is the one who told me it wasnt really clear and that she wanted a follow up scan. So i got a negative but it was a false negative...like a teaser

Eileen, your so sweet, yeah it was that long ago, but my Rad Dr considered it a negative and wasnt overly worried it is my ENT who only just got to see the films...(my bad i forgot to request a copy get sent to her) i suppose it's better to make sure it's just awful to get an all clear then have it snatched away...so soon too.

Tom thanks bunches for writing, it is good to read others have had areas show up who go on to get an all clear, i guess your right it is early and i was warned something could show up just wasnt expecting it...kind of...

Jim good to read you again hope your well, one month down 11 to go right...i love the attitude, pma boost.

I have been told i will now have 6 month pet scans until i'm all clear for 3 years thats keeping an eye on it i guess.

Hey and last night i had the best night in ages too...i had the very first post treatment night when i had some saliva, it was amazing to swallow by my self (no glass of water) and have something to swallow, i'm still over the moon about that, and i have been checking all day that it's really real and still there...nuts right.

thanks again everyone...Debz

My point was that it wasn't really a false negative. Your ENT may "see" something on the PET, but the point is that your RO and the reading radiologist quite likely "saw" the same thing, but attributed it to either normal metabolic activity or inflammatory changes from treatment. Your ENT is likely being ultra cautious.

In the course of my experience with the dreaded PET, I spoke with many people and read a lot about these exams. It takes a lot of technical skill and a lot of artistry to not only read them but to understand what that reading means in context. You can read lots of literature that says an SUV of 3.0 or higher is strongly indicative of cancer. Yet that does not necessarily apply to post treatment head and neck cancer patients.

Follow through with your ENT, but do not be suprised if your RO and reading radiologist were correct. These difficulties are the reason many will not use PET at all, and others only as an adjunct in post-treatment Head & Neck Cancer.