Hey everyone, yes, I'm still on the board. I'm patiently waiting for my head and neck ct scan. I had to go back to my GP and request this test. He said if the scan is questionable he'll send me to a surgeon to get a biopsy. Why wouldn't someone have done FNA of my palatal lump by now? All the doctors say it feels like bone. I'll give them that, it does feel like bone. I want to know for sure that its bone, though. Are cancerous tumors never hard like bone? Will this scan define whether or not this lump is bone?

my tumor was just 1 big raw sore on the side of my tongue that never healed.yes the ct scan shows everything at least it did with mine.i wish u luck.i sure wish i would of known about this site when i was looking to talk it's been 3yrs. and my husband and my kids still will not talk about it.u will like it here i have learned alot and so will u, good luck and i hope to talk to u again soon.
lynn

Well scan is set for Monday at 800 am. This should show where the bear came thru the buckwheat so to speak. I'm ready to get off this freakin roller coaster one way or another. I'm claustrophobic so this oughta be special, hopefully their machine is well put together in case I go skitzo.

Hello Youngin

Hopefully you will be able to put this to bed. I have had 1 CAT (motorcycle accident) and 1 PET scan. The CAT was like a long tube. I felt a little closed in but not bad at all. The PET was easier. You just lie on a "sliding" bed. They give you an injection and then slide just the head and chest in and out a couple of times. My machine had a big opening, and I did not feel closed in at all. From the time I walked in to the time I walked out it was 20 mins. tops. I do not think you will have any problem at all. Good Luck, Petey

I was wondering about you and how you were doing! I'm sorry it's been such a roller coaster ride. Glad you are doing the scan, tho'. In case you haven't visited the OCF info on this, just go to:
http://www.oralcancerfoundation.org/diagnosis/

This has a good explanation of the CAT and PET scans. Be sure and tell the doctor how you are feeling and claustrophobic. If you tell them ahead of time, maybe they can help you with it. My son had a combination PET/CT scan and he fainted but they couldn't let him lie down for some reason and it took a while to keep going with him. I think his blood pressure may have been low. Everyone reacts differently, you know, so you might just breeze thru the whole thing. If you still have my son's email, just send him an email if you want more specifics.

I'm in Mexico visiting a friend of mine and lo and behold, there must be a "hot spot" around because my laptop works great in any room of her condominium! I feel like I've brought OCF w/me to Mexico!

Let us know what happens, ok?

Hi youngin,

I've had 3 scans (2 PET/CT's and 1 neck CT). I don't have a clue if I would have had problems with claustrophobia because I always closed my eyes at the start and opened them at the finish - maybe that approach would help, since there is no requirement to keep your eyes open.

Best wishes,

Chris

Youngin
The lump that I found in my mouth that started this roller coaster for me was very hard, white and where it should not have been, right on the floor of my mouth.
Best of luck with your scan. Atleast you will find out what you are dealing with.
The CT Scan should not bother you it is very quick. I am having my 1 year anniverary scan on Tuesday at 9 am.

Yougin,


I will be thinkin of you tomorrow and Adele on Tues and Anne marie...CONGRATS on the vacation ..I want to go on one !

Hey guys. That scan wasn't bad. This thing was like a doughnut. She just injected me with some kind of dye stuff and ran me through it a few times. She said my doctor should have the scans tomorrow. Adele, good luck with your business tommorrow. Anne-Marie, Sharlee, Petey thanks for staying with me through this. I'll let you all know how this works out. I still can't be believe how self-service the process has been to get definitive information.

My GP's nurse called me with his interpretation of my CT scan. He said node on left side is slightly enlarged but no need for concern. No mention of my lump on palate. The order on my CT scan even noted "attention palate". I knew that node was enlarged, I could feel that. My main concern is the lump in my freakin palate and it's potential relationship to that node. Is this really that difficult? Somebody throw me a freakin bone here. So I called back to the doctors office to see if I could speak with him about the scan. The receptionist said I would have to make an appointment. So here I go back to this guy to ask him what the lump is. Does anyone have any suggestions? I guess if I dont't get a definitive explanation from my family doctor I'll have him forward those scans to the Oral Surgeon at the CCC. Unbelievable. This has been like pulling teeth. No wonder why young folks are dying from this disease because of advanced stage at diagnosis.

Tell Me About IT!
I would call the doctor again and insist on speaking with him. To have to get another appointment is asinine!
My MO has a "special or certain" type of computor. You can not do it on a regular computor, or you must have a certain program. He said a name but I can not remember it but it is tied to the hospital and he can view the images from both of his offices.
Maybe the surgon has this option. Your posts do wonders for my cardiovascular system! Thank You!

Petey,

I know your up for surgery tommorrow. I've been praying for you brother. Give em hell buddy. Don't let my posts cause you any anxiety. My issue may be as simple as a miscommunication. I just want to know that a doctor has looked at the lump on that scan and has identified what it is composed of. He may have looked at it and already determined that it was bone.

Had my scan yestersday. No results for me until I see my oncoligist next Tuesday. It is not easy to wait.
Youngin, please see your Doctor and discuss your results.I do hope for your sake it is nothing, but you must check and be sure. If you do not have an ENT, ask to be sent to one along with your results. This stuff is not for GP's or their nurses...

I've found this thread interesting because things seem to be done so differently here! In January, having slight numbness of lower lip went to doc--'No idea, use mouthwash or see a dentist' Dentist appt 1 week later--good exam, suspected thinned jawbone, exposed nerve. had X-Ray, confirmed, letter sent to maxiofacial surgeon. Appointment for 19th April!! Twicew during those months, my jaw seemed to 'crack', swelling began and pain built up. Saw surgeon who said 'oops, probably IS cancer, sent me for immediate chest X-Ray and marked MRI scan form 'urgent'--said it would be done and I'd be back in clinic within a week--after a week I phoned and was told appt. was earliest available at May 15th! Hospital rang me today to say appt probably next week--guess now they're REALLY telling me something!

I hate to break it to you guys but the definitive source for CT readings is the radiologist - not the refering physician. In fact, refering physicians rarely even get the full resolution scans. You can have your oral surgeon look at scans but that's why they pay reading radiologists the big bucks. It is a specialty after all. Typically it's the MO who will order them and give you a summary of the reading. You may be refered to an ENT or head & neck surgeon for "direct visualization" if they don't like what they see or have "regions of interest". Most of us have had false positives in early post Tx scans so don't let that get to you.

Also bear in mind that any scan is only a small component of the total diagnostic package and in themselves are typically not definitive.

I found out that Gary's right. After meeting with my Dr. on Friday it was obvious that he'd never even seen the scans. So I guess one must trust that the radiologist knows what he or she are looking at. In my case the radiologist noted that a node was on the upper end of normal size and that was it. I ask my Dr as to what should be my next steps. He said to go home and relax, which is exactly what I'm going to try to do.