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NOT so clean PET/CT Scan. Anyone out there with a similar experience

Vivi C's picture
Vivi C
Posts: 70
Joined: Jul 2010

I just got the results of my 3 month PET-CT Scan following SCC @ BOT with one lymph node on the same side involved and it showed residual activity in the lymph node which measures 0.4 (it was previously 1.2 cm). The tumor at the base of the tongue is gone. Radiation oncologist is not concerned (I am!) and believes that this activity is due to lingering inflammation from the radiation. Plan is to consult my ENT next week and get his opinion and decide if lymph node should be removed or wait and repeat PET-CT Scan.

Anyone out there with a similar experience? I would appreciate any input or suggestions as I am dissapointed that I cannot do the NED dance tonight. Thanking you in advance!

Viv

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Viv,

I have not posted my 8 month scan results, because we've been doing so well here, and I felt like a failure (in more ways than one). I started SCC@BOT with two lymph nodes all on same side. Did induction chemo, then chemo rads. Three months out, CT and PET showed clean tongue and formerly huge node a non issue; only exception was the formerly enlarged node was still enlarged (but smaller), and still lighting up for the PET (but activity greatly reduced). We went with a wait and watch approach.

Insurance company balked at a PET eight months out, so I got only a CT - it showed the lymph had increased in size, so THEN insurance approved another PET which showed the PET activity level doubled. Ramping up for a neck dissection now - hopefully the Dec. 21st surgery will rid me of the cancer.

I don't want to frighten you - quite the opposite. My RO had every reason to believe that the cancer in the last node was dying, and would not show up at all on my next test. He thought that would be the case because it very often is the case. Please know that there's a really good chance that your next scans are clean - I'm hoping that's the case. Many people get what they call "false positives" on early PETs; many folks here will tell you that their docs do not do a PET as early as three months post treatment because of the strong possibility that "normal" inflammation and healing tissue will show up as something they're not. Good luck with your next set of tests. Do well.

adventurebob's picture
adventurebob
Posts: 690
Joined: Jun 2010

Hi Pam,
I don't think I had read this information about your results prior to this. I'm sorry to read it now. You are always in my prayers as you have been so supportive and inspirational to me since I first joined this board. You are now even more so. I'm looking forward to reading amazing results from your upcoming surgery and any future scans.

Bob

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Bob, Deb, Scam and Viv, (and others who may not post, but nonethesless hope I do OK - I know you're out there, I am often one of you) thank you for your words of encouragement and hopes behind the words. It makes a difference. I plan on focusing on your words the night before my surgery, to psych myself up. Also planning on asking anesthesiologist to "vocalize positive affirmations" to me (sounds kinds silly put that way; hoping he/she doesn't laugh in my face). Still hinky about surgery - not the procedure itself (yet), the being put under part. I know I'll be fine (almost all the time). You guys be fine, too.

Be thinking of you Tuesday, Viv.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Pam,

This is the first I saw of this, I'm so sorry you have to go thru surgery. But you're one tough cookie and you'll kick this one's butt for sure! You are always there for everyone here on the site and always say the right thing along with adding that humorous note. We'll all be thinking about you. Sending positive thoughts your way!

Greg

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

So very sorry your results were not as good as they could be. We're still here for you, every step of the way. This is a very very small bump in the road. All will be well.

Deb

Hondo's picture
Hondo
Posts: 5636
Joined: Apr 2009

Dec 21st will be my pray day all day for you Pam, I am sorry to hear this but remember you are not a failure, remember I had to go through it three times my self and the more times I went through it the closer I got to know my Lord

You have and will always be a blessing here on CSN

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I really appreciate prayers.

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

Vivi

Continue to believe that all will be well. As Pam said, many people show residual activity on the 3-month PET-CT that resolves over time. I am so happy to hear that the large tumor on your Base of Tongue is now gone. To me, that is the very best outcome of your treatment!

Sending you healing thoughts. Try not to fret too much. If your oncologist says he isn't worried, I'd believe him.

Deb

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Viv,

My first Scan 3 months out showed some activity also but I was given the all clear as they said it was inflammation.

The 1st scans out are difficult as often will give a false positive but if the readings are below 2.0 things should be fine. They do make sure there is nothing major happening i.e no other major sites showing up. I had my next scans 10 months later and that one came back all clear with nothing lighting up at all. Hope that is your case too. As you know I also went full on with diet and supplements which I believe has helped me sugnificantly.

Pam,

Sorry to hear you may be in for surgery. Wishing you the best and that they get the mongrel thing out once and for all. Sending the good vibes your way.

Scam

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

The first PET, especially one less than six months out is very common to come back showing residual activity.

I'm definitely not a professional, and your ENT should have the final say on recommendations and treatment plan.

But I wouldn't get overly concerned just yet.

If you do a search, and I'm sure many on here will also chime in. You'll find this a very common characteristic of scans less than six months post treatment.

Best,
John

scottied's picture
scottied
Posts: 37
Joined: Nov 2010

I had the exact thing happen to me. My ENT told me before my 4 month pet scan that dead cancer cells can light up on a pet scan just as live ones do (they call them ghost cells). Mine lit up so as a precaution they took the lymphnodes out of my neck sent them to pathology and the results came back that they were in fact dead cancer cells. As for the surgery, I had it back in April and everything went fine. Now other than a scar that basically is in the crease of my neck, you wouldnt know I had the surgery. Good Luck!

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

At my 3 month PET I also had some signs of activity. My docs recommended waiting until my Oct scan 7 months post and all showed up clear at that time. Hope all goes well.

Ed

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

NED is great but many of us never really get the all clear. Keep it in perspective, you can certainly skip or just put a giddy up in your step and celebrate what you have gone through up to now. You're allowed one hop! A neck disection may or may not be your next step but don't rush into it as it has many lingering problems of it's own, none insurmountable I might add. FYI lymph nodes are normally removed in chains, think of them as christmas lights strung together. It's unlikely a surgeon would remove just one.

Vivi C's picture
Vivi C
Posts: 70
Joined: Jul 2010

Wow! I've said before and I'll say it again: YOU GUYS ARE THE BEST! Thank you so much for your comments and your words of encouragement. They mean so much to me. I am very grateful that the tumor is gone but obviously dissapointed that I did not have a completely clean scan. Will consult ENT next Tuesday and see what he has to say.

Pam, my prayers are with you. Please keep us posted after your surgery. Blessings to you!

Deb......hope you are feeling better and getting over your cold.

Thank you all,
Viv

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

When my dad had his first scan about 2 monthes out, the tumor on his tongue showed some activity. They oncologist thinks it is dying cancer cells and he will have another scan the first of the year. His ENT was ready to do surgery, so we decided to go with the oncologist opinion. Please keep us updated.

Kathy

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

You betcha there's going to be some yellow glow after only 3 months. My first PET after 8-weeks had some residual glow all over the place. My throat looked like a bean and my vocal chords looked like 90-year-old, hanging-low, stretched and worn... (never mind). Check out my before and after PET image here:

http://www.caringbridge.org/visit/dougbernstein/photos/3

So think about it. Cancer hurts you by growing tumors which interfere with your bodily functions. If they've been stopped, aren't growing, aren't interfering and aren't hurting you, than you're in GREAT shape! What's most important is the next PET 6 months from now and the after that and the one after that - in which you can compare the difference. The MOST important is the quarterly scopes by the ENT. Make sure to get digital images of each visit so that there's a continuous record of what it looks like in there!

SO DO THE HAPPY DANCE! The docs didn't put you back on chemo or start sharpening their knives. They don't call this thing remission for nothing!

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

It was in 1998 when I completed my treatment. The scans every six months showed no growth and the radiologist/oncologist both could not determine whether my NPC was active. They kept on watching.

I do not know the exact year, but I believe it was at least two years later. They finally determined that it was residual scarring tissues.

Pam, my best wishes and prayers to you.

Clearblue
Posts: 188
Joined: Apr 2010

Hey Doug

"digital images of each visit so that there's a continuous record of what it looks like in there!"

Are u talking about the scans or the scopes.
Excuse my total ignorance , weve never received digital images of scopes, and weve had loads of them.

Clear

Clearblue
Posts: 188
Joined: Apr 2010

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Hondo's picture
Hondo
Posts: 5636
Joined: Apr 2009

Just remember there are a lot of times the PET scan will show something that is not really there. For me it was the old dead scar tissue left over from all the radiation, 5 years later I am just now getting NED reports. Hang in there and keep being the strong person you are, we will get to do the NED dance for you someday.

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

I had an MRI show a bunch of lymph nodes that looked necrotic. I had a lymph node biopsy which was NED and then I had 16 lymph nodes removed which were also NED. But the scan showed a problem. One even lit up a little with the PET scan, but the ENT said it could be inflammation or infection, so my point is there is hope that it is nothing. Good luck to you. Shelly

Vivi C's picture
Vivi C
Posts: 70
Joined: Jul 2010

I am overhwhelmed with gratitude by all your comments. Thank you for sharing your experiences with me. Will see the ENT on Tuesday and we will take it from there. Meanwhile I am rejoicing that the tumor is gone, that I can swallow, that I do not take any medications for pain or thrush or anything else, that I get to spend this wonderful Christmas season with my wonderful family and that one of my daughters is home (from college and the other one will arrive next Wed!). Looking forward to my NED Dance in the not too distant future. Thank you for your generous spirit!

Pam......praying for you!

Viv

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

My 3-month results sounded a bit ominous- "something may have shown under your tongue." Thing is, my ENT wasn't concerned about it- so soon post-treatment, and in that area, has a tendency to be false-Positives. That was 1 1/2-years ago! And my 1-year PS/CT was clean. The tests are subject to errors- only way to know for sure is with a biopsy. Hopes and Prayers are with you and your family.

Believe

kcass

greg from pa
Posts: 86
Joined: Jun 2010

My name is Greg. I was diagnosed stageIV SCC,BOT w/mets to more than 3 nodes last April. I finally got a clear scan last month. it took a long time. It sounds like your 1st post treatment pet was good news with the primary gone.I too have heard of many of these early post treatment scans showing activity only to clear up on subsequent scans. We are all pulling for you and my prayers go out to you. Stay strong and Merry Christmas! Greg

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Viv,

I had the same thing. Went back in for biopsies and all was clear. Mine was said to be 0.5.
My ENT was just being sure and I thank him for that.

Best,
Steve

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