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Ok, first, I'd like to say Hi to Brian, Gary and all the other "old timers" here. I know it's been a while, but after 5 years I thought I was done with this stuff.

But.. went in for PET/CT today, follow up, almost 6 years after initial diagnosis, and lo and behold, the PET shows a strong "uptake" of tumor cells suggesting possibility of Nasopharyngeal Cancer. Now I've just gotten over a bad sinus cold, like yesterday was the first day I didn't have to take cold medicine. So I'm wondering if this is playing a part in the whole thing. Radiologist says "NO" but last time I went in for PET/CT with a cold there was massive uptake. Year later, no issues.

No other issues or uptake or any other sign of disease other than in the nasopharynx. Just there. Almost like it was fond either very early or by accident. Apparently nothing abnormal shows on the CT scan even.

Doc says it's pretty rare in Caucasians, although he sees it a lot with those from Southern China. I had the tests done at Adventist Hospital in Hong Kong where they treated me for tongue cancer.

So far, the plan of action is Oncologist is doing a blood test for Epstein-Barr virus gene, and after that see what happens. If negative, than will re-scan in 6 months. If positive, then the scope up the nose and possibly biopsy.

I'm hoping for false positive because of the cold, since I've had that before, but we'll see. This is a different radiologist than before, and apparently he/she's very very cautious and thorough. Apparently for the first time the report will even have a lengthy discussion about my lung fibrosis from the previous rad sessions, complete with photos. Which will be good to have because every time I get a chest X-ray the doc's go nuts.

Anyone else had problems with false positives because of cold symptoms on a PET/CT? Could this really be a "false alarm" or am I in for a THIRD round of rad/chemo? How many times can you do IMRT anyway???

By the way, I'm having absolutely no symptoms, other than the cold last week,I feel great.

Bob

Last edited by JetAgeHobo; 12-08-2008 06:35 AM.

SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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Hello Bob! I was wondering what you have been up to. I do not have any experience with your question but I am sorry to hear that you have to think about this again. Lets hope that it is a simple infection and nothing more.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Hi JetAge,
I was just thinking about you the other day and wondering what you were up to. Here's hoping this is just your cold and not round three. Why can't she scope you without doing biopsy to see if there seems to be anything out of the ordinary? Why the test for Epstein Barr? I don't understand relationship.

Take care and keep us posted,

Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Bob,
The doctors never found my primary, but based on the location of the metastasized lymph nodes determined it was either in the Nasopharynx or Oropharynx.

I tested positive for EBV (and HPV). My Racial mix is primarily Euro-Caucasian with some American Indian, but the Indian is not Aleut so likewise I don't seem to fit the racial profile.

They put me under surgically, then examined and scoped and nasopharynx. I was told it looked absolutely normal and in cases of EBV related Nasopharynx cancer it should show noticable scaring.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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Bob,
great to see you back but not under these circumstances! I can't help you with this since my HMO is adament about not giving post Tx PET/CT's. My MRI's, until fairly recently, never were very stellar but they are finally comfortable that everything is ok. I wish the same for you as well.

It would seem logical that a sinus infection would draw blood to the area and show up as a hot spot.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Hi all and thanks for the response, life's been a bit interesting, was living in the states for a while, now back in China, "in between" jobs at the moment and need this like ...well like I need this.

Eileen, apparently the EBV thing is THOUGHT to be one of the causes of this sort of cancer, along with being from certain areas of the worlk (like S China, where I happen to live) and eating salted meat and fish) Mostly a viral/genetic thing.

After I wrote the first post, I went back and reviewed my previous scans, one in 2006 showed a high uptake, as I had done that right after a bad cold, one in 2007 showed low uptake.

The doc wants to do the EPV test before re runs a tube up my nose because the test seems a bit discomforting in his words. He also knows I' a baby when it comes to this sort of thing.

Now, to make matters even more confusing, the air's been real dry, humidity in the low 30% so my sinuses are a bit dried out. Of course go to blow my nose this morning first thing and get a bit of blood. Not a good sign.

So, going from the "denial" phase to to the "What if" phase...

Treatment?

I've had 2 rounds of IMRT, each side of neck, 1 and a half rounds of cisplatin.

Can they do yet another round of IRMT to the nasopharynx region? What would the side effects of this particular treatment be, etc.

Thanks
Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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Hey Bob, I have never had a PET scan so it is entirely possible that I too have a problem because I blow little amounts of blood about weekly.

If I were you I wouldn't conclude that blood was from anything other than leftovers from your cold. You know the rule: it ain't cancer till the pathologist says so....


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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I have bloody sneezes all the time. My mucous membranes that line the inside of my nose get dried out, and when they do, they bleed. The radiation just turned them into tissue paper. You can also develop a benign polyp in your nose that will bleed when traumatized. Having said all that, given that we have all seen that can go wrong when we ignore things, I would want a ENT to scope me and have a look. Better safe than sorry.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Bob, I too have had increased uptake in the nasal area and in the adenoidal area, and it was interpreted as inflammation from seasonal allergies.

I have had numerous nasal scopes, and they are absolutely NOTHING to worry about.....do it now! I certainly would!

I have recently been blowing bits of blood also, and when I looked in my nose with my trusty little flashlight, I noticed that the nasal septum is very inflamed, and the tissue is very friable.....bleeds at the slightest touch. I had it checked....twice..and was told that my septum is slightly deviated, so that the air hits it more directly than it does on the other side and keeps it inflamed (I went a week or so imaginging what THAt surgery was going to be like, since I just KNEW that it was more cancer!) He said that I might always have the inflammation. I wonder what this is going to look like on my next PET scan!

I sure do hope you get a pleasant surprise, but you asked, and yes, I have had some nasal inflammatory uptake observed on each of my scans. I hope that's all yours is, but I would ask them to scope you NOW, instead of waiting for six months. The scope is very benign.

XO


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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I have the same issues Brian does. Almost daily bloody noses, especially when the weather is dry out. I had all of this pre cancer as well - all of my life in fact.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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