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ooo's picture
Posts: 107
Joined: Mar 2012

Had my first PET-CT scan on Saturday and ran home to look at the cd. Everything looked good to me --> NED Do it Yourself. I was not as brave as Skiffin to announce it to the public, though. Just came back from the doctor office who confirmed my self-diagnosis --> Officially NED.

For the newbies: I was diagnosed in February 2012 with SCC of the tongue, stage I with perineural invasion. Had surgery, IMRT and brachytherapy. Ended treatment in June 2012. Doing really well right now, only a bit of Lhermitte's sign, a very slightly dry mouth and can't quite roll my R's. Can't complain, really. My treatment was pretty aggressive and I'm happy I didn't play too conservatively.

The weeks prior to getting scanned have been pretty humbling. A coin toss is a coin toss. Anyways, my good luck won't go to waste, I'm ready to give back to the world.

Much love to all of you, fellow fighters and caregivers.



CivilMatt's picture
Posts: 3418
Joined: May 2012

Hi Dre,

Tell me, how do I read my scan? Glad to hear NED again and again. Roll your R’s for me it was getting my whistle back.

Keep healing!



ooo's picture
Posts: 107
Joined: Mar 2012

Thank you all for your messages! :)

This is what to do to self-read your scans:

1. Right before or after your scan, ask if you can have a cd with the images for your record. They'll ask you to wait 10 minutes while they write the cd.

2. Insert the cd in your computer and launch it. This time I got an error message and I had to download a .dll file from the Microsoft website. It was really easy, so don't get discouraged if you have to do it too. The cd of my very first scan, instead, started without any problems.

I guess what follows depends on the specific software they load on the cd. In my case:

3. I see a brief list of exams (e.g. CT only, combined PET-CT, ...) I click on the exam I want to look at.

4. The screen gets divided into four quadrants, one with a 3d rotating image of my body, and the others with sections along the three axes.

5. It took a few minutes of trial and error, but with the menu on the left I could explore different slices of the body, zoom in and out, change the brightness of the PET data superimposed to the CT data and so on.

6. Ideally only tumors would show up as bright spots and everything else would be dark. In realty there are bright structures with varying levels of brightness (your brains, believe it or not, is super-bright :P, your bladder, part of your kidneys, ...) Online you can find a lot of images of healthy patients and use those as a reference. Also, right after treatment some diffuse brightness in the areas that were treated has to be expected. In my very first scan I had a few spots on my shoulders.. they told me it's brown fat.. didn't see any of it in my last scan. The point I want to make is that there's a lot of anatomy knowledge (which I don't necessarily have) that goes into interpreting the images.

Which brings me to my disclaimer:

Your self-diagnosis must not replace the opinion of a qualified doctor. And for the faint of heart it might be better to wait for a few days without knowing anything, instead of playing radiologist.

Good luck to all of you!


cureitall66's picture
Posts: 911
Joined: Aug 2012

Glad to hear your news. We are just starting tx. Going through some trials of radiation to the tongue right now...but counting down our days/weeks of treatment is getting us to hang on.
Better than the alternative.

Hope you continue to stay on the forum and share your inspiration to everyone.

Bless you and us all.

phrannie51's picture
Posts: 4268
Joined: Mar 2012

Congratulations on your Neddy O'Ned!! I've wondered where you'd been. This is great news, I'm so happy for you.


Skiffin16's picture
Posts: 8264
Joined: Sep 2009

Glad you figured it out...., I kmow Matt can also, LOL...


meaganb's picture
Posts: 243
Joined: May 2012

Reading these posts never gets old! So glad you are healing well and may you have many more NEDs in your future!

Posts: 657
Joined: Mar 2012

Wow I did not know you could bring your CD home and do a self exam. But you hit it on the head NED and why not let the Docs confirm it, gives them something to do. So happy for you NED forever.

Billie67's picture
Posts: 834
Joined: Jul 2012

That is amazing news! So happy for you, now go an celebrate!

VivianLee5689's picture
Posts: 546
Joined: Aug 2012

So glad to hear you received the NED. That is wonderful news.

Pam M's picture
Pam M
Posts: 2196
Joined: Nov 2009

Glad Club Ned is not nearly impossible to get into. Welcome. I'm sure the party is still going on at your place. Good

Posts: 1911
Joined: May 2012

Hey there ! I'm getting so excited for all the NEDS on board. Congradulations, your post made me humbled. You fought hard and won, what an amazing feeling. Go get 'em Dre ! Katie

hawk711's picture
Posts: 553
Joined: Jan 2010

Can't get enough NED talk....All the best, now go enjoy the day!!!!

Laralyn's picture
Posts: 477
Joined: Apr 2012

It's so awesome to end my workday with news like this. It definitely puts a smile on my face for the ride home!

Tim6003's picture
Posts: 1506
Joined: Nov 2011

Awww....thoese lovely three letters...the grass is greener and the sky more blue than ever now.. :)

Very happy for you ..



Tonsil Dad's picture
Tonsil Dad
Posts: 489
Joined: Dec 2011

Best three letters in the alphabet
I pray all your future scans are the same.

God bless
Tonsil dad,


Hondo's picture
Posts: 6296
Joined: Apr 2009

I agree you just got to love that word


luv4lacrosse's picture
Posts: 1412
Joined: Jul 2010

That's some good news my friend. I have my first scan w/ contrast tomorrow afternoon to see if the chemo trial I am on is beating back my recurrance.

Hope to read many more NED's today and tomorrow in anticipation of my scan.

Now go live a little and have a great rest of your weekend.

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