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

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.

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

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.

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.

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

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....

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.

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

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.

Know what you mean about the bloody sneezing, I used to never have nose bleed problems, then 4 days after moving to Los Angeles from St. Louis, went to sneeze and oh boy! Co workers told me "welcome to LA"

Lived in Mohave dessert for about a year, had to use saline nasal spray and biotene quite regularly.

I think this is mostly from recent head cold, was up northern China in a city called Fuzhou, temps down in the 40,s no heat in the apartment, and got a good chill in the sinuses. Started sneezing, took about 4 days to take hold, then a good head cold. Felt like crud, chills, hot spells, green goo coming out of all sorts of orifices, etc. Even settled into my jaw causing a toothache. That was late last week, then had to drive 11 hours to Dongguan. Luckily they have a local brand cold medicine here that works wonders on the symptoms, doesn't dry you out too bad or make you drowsy. Great stuff.

Weather here very dry now so I suspect that only irritated things more. Then dumb me goes for a PET/CT....with a sinus infection. DUH! Sinuses still feel a little screwed up. I really think this is another false alarm, but we'll see what the other tests say.

Thanks for the support guys (and gals!)

Come to Florida where we seldom have low humidity issues.

If it doesn't stop soon, I would insist on a nasal scope...My dr. does it in his office....brings a little kit into the exam room....sprays some numbing stuff up there, greases the tip of the flexible scope, and I never feel a thing. I myself--as a cancer patient--wouldn't wait 6 months to have someone look. It's just too easy, and the costs of missing something are too high. Why not give yourself some peace of mind??

my daughter gets bloody noses real easy esp when heat goes on in the winter ... dries out her nose so quickly... in fact she had one last night and it dawned on me i had not started the daily vaseline yet ... so that is what i am doing as of today ...

doctor told me to put a little vaseline in the nose, using a qtip, to keep it moistened... it worked wonders last year so you may want to try that if you get recurrent bleeds... it is many times just from dried out and sensitive tissues.

Fingers crossed and wishing the best outcome for you.

Many of us have a common birth defect of having veins too close to the surface, inside the nostrils. During dry weather the thin skin over them cracks and they bleed. AC and heat also strip humidity out of the air and that is why I run a cold type humidifier, 24/7, 365 days a year) My H&N doc says rub vaseline to maintain moisture in the area but it also cuts my sense of smell so I tolerate the nosebleeds (this is best applied after a shower to hold the moisture in). An unscented, non petroleum based moisturizer may be something worth trying.

Colds and flu just destroy the delicate balance of things in the nostrils. (by the way there is NO scientific evidence that exposure to cold causes flu or colds). But having spent time in Southern China I would live with a bottle of waterless hand cleaner in my pocket.

I have to agree with you Bob - I would wait until I had no other medical issues, like sinus infections, prior to getting a PET.

Southern China weather is basically tropical - even in the 40's, I would imagine that the humidity is still quite high as it is in the SF Bay Area on most cold nights.

NPC is really rare amongst Caucasian Americans. Being Chinese is a definite risk factor for NPC. EBV is a risk factor, although very slight. Most people will test positive for EBV. It's almost universal in the States, however, only a small amount of people, less than a couple thousand, a year ever develop EBV State-side.

You could have a broken blood vessel in your nasal passage from the dry air. Are you using any inhalers? My dad had something similar happen. We thought it was NPC, but the ENT did a scope and found nothing. MRI confirmed it a week later.

Get the scope. That would be an easy confirmation. An FNA biopsy of the area would be another.

I concur with much of what has been said.

Get the scope done. My former ENT did it every 6 months, and it was not a big deal at all. 5 - 10 minutes, done.

I have the same issues with periodic bleeding during these winter months. Between working in a sealed office building, going out into the cold, etc., my nose is a mess. I also have sleep apnea (which has improved since my treatment, incidentally), and when I use my CPAP, even with the humidifier, I still have issues.

My furnace went out Monday, and I worked from home yesterday while they fixed it. House got down to 48 degrees. I started taking stuff out of the refrigerator to keep it cold. ;-)

LOL good thinking Jeff. I keep the humidity in my house as close to 50 as possible and I have been having no problems with dryness. My Dr does the scope every time I have an appoitment, then I usally see the surgeon that did the implants a week or so later and he does the scope. LOL Could be nasal interiors turn them on lol. J/K they are very caring.

A few years after I took an early retirement from being a Corporate Cubicle Convict, I realized that I was hardly ever getting colds or flu because I just wasn't mixing with infected people every day.