I am putting a new name to the definietion of abnormal and one who dais not follow any textbooks. I even have my Doctors stumped on this one. I got a phone call at school that there was uptake on my tongue. I am thinkingthe uptake was at the back of my tongue. Well my RO calls after I get the call from my ENT and headed down there to see him so he can take a look. He came in the office just to see me. Love my ENT. I begin telling my RO about the pain, not knowing he talking of a different area than I am. When I ge tto my ENT's office he showed me the PET scan and te front of my tongue was lit up like lead balloon. He said that if it is lit up that much there should be something there. The CT part of the scan did not pick up anything. He did not feel or see anything in that area either. However, I was telling him about the pain at the bck right of my tongue. He poked and prodded, and then decided to shcedule an MRI to get another look and see if the MRI shows anything. So shall I be worried for the simple fact that this morning I noticed a white spot on my tongue that was not there yesterday morning. My ENT said it look like scar tissue, but since it was not there yesterdy it is bothersome. Hence the MRI next week sometime. Anyway, I am still on pins and needles because something is different in m mouth than it was a week ago, but the PET showed a different area. How crazy is that?

Geez Angelia, will it ever stop? It's a wonder we don't end up having heart attacks waiting for definite results and solutions. I know you're worried, but your ENT is encouraging, and I know things "light up" that aren't cancer - think you've had that before, haven't you? Anyway, you're in my thoughts and I definitely will be praying for you to get a good, clear, non-cancer diagnosis.
julieann

I have never had a PET scan light up before. Well, except that time two weeks after surgery, and that was due to the surgery.

PET scan is a non specific indicator of increased metabolic activity of any cause. It is elevated in several conditions such as inflammation, increased activity of muscle and malignancy but can not specifically differentiate between them. If there is nothing there on CT or MRI it may not be cancer. I would not panic and wait for your ENT expert to investigate it or continue to observe it.
I had false alarms myself with PET scans as they are often misleading.

I Brook MD http://dribrook.blogspot.com/

Relax! PET scans are known to give false positives. Its happened to me twice. Dont get yourself all worked up over this. You dont know what is going on yet so its best to try and stay busy. Getting upset wont help you at all. It could be scar tissue or an inflamation. If the sore just appeared then it could be anything, if its still there in 2 weeks then it needs to get checked out. Hopefully, everything will get sorted out very soon. Sending lots of prayers your way.

Angelia

My doctors don't even suggest a PETscan anymore due to the false positives and negatives they have seen with mine. At least for base of tongue cancers, I've seen figures of 50% error rates .
Why, because a PetScan cannot differentiate between your tongue healing itself at a rapid rate or a cancer tumor. Worse, it can give you false assurance that all is well and miss the slower sugar uptake of the tiny tumor recurring. All of that has happened to me. The CT and MRI have always been accurate though. If your MRI is clear, it's unlikely your cancer is back.
Charm

Thanks guys. All I know is that I have not eaten any solid food since Wednesday because it hurts to bad. I know the Drs are looking for a tumor that is sticking out this thing is caving in or something likethat. It is like there is an indention and them a white area about a CM long. I called my MO and asked if he had received the PET results. They had not received them yet, so I told the nurse what was going on and I am going to see himon Monday. If he thinks there is a concern it will be taken care of. I know my MO will not waste anytime. He does not fool around with this stuff. I did hoever take a picture of this thing, but when I looked at it was kind of blurry, but you could still see it. I am just tired of not knowing and of Drs telling me that I do not follow their textbooks.
As to the CT scan, I do not trust those becaause it did not pick my first cancer at all.

Angelia -
Praying for a good outcome.
Marlene

Angelia, my thoughts too are with you. Let's hope this is just the oversensitivity of the PET. Hang in there!
D2

I do not know if I can do this again. The pain has gotten to the point that I can barely eat mashed potatoes and gravy. It hurts just to move my tongue. I do not want to go through this again, especially at Christmas time. Just needed to vent.

Hi, Angelia,

I am so sorry that you are having pain and I can hear the worry in your words. Waiting two more days must seem like an eternity now but hang in there. You have a lot of friends pulling for you. Keep venting.

My best to you-
Anita

Geez Angelia, It's time for you to get a break so you can calm down and relax. You are a very special lady and needed by not only your kids ar home but the kids you have at school. Gonna have to give uyou extra prayers and hope everything is OK.

Thanks Jim. This is so nerve racking. The not knowing is the worst. I wold just like to know so I can get on with my life. If I knew it wa snot cancer, I could leanr to deal with the pain. The right side of my tongue is rapidly changing. I have a 2CM indentation with a white area in that indentation on my tongue. The indentation is bigger then it was Thursday when i went to my ENT. UGH!

Do you get food in the identation? When I brush and rinse after, I have enough food come out of my hidden places in my mouth that I could feed a hungry person. LOL Unless my mouth is that large. I can feel your pain thru your words. I won't even look into my mouth since the 1st time I did. It's scary isn't it.

Angelia, Vent away..I know there is not much we can say, but we are praying that you will know something soon and get some relief.

Sharon

I am so scared. I do not want to do this again, not at Christmas time. It is not fair. I know they have not said the words, but I know my body and I know what is changing on my tongue daily, is not good. The pain is increasing by the day. I hope that my MO can get something done for me.

Angelia,

Be calm my dear. It is normal to worry, but do not let worry turn to panic, which is what I'm reading in your post. Breath...in and then out and know that you haven't heard the words yet and no matter how well you "know" your body, even you can't tell it's cancer without a biopsy.

I know it's tough to hear, but really get it out of your head and enjoy the season with your loved ones. None of us are guaranteed tomorrow, so treasuring the time you have with those you love while you can is really what life's about. Let tomorrow and the next day or the next bring what it brings, but live and love and enjoy what you can. Life's too short to let worry and hysteria steal the joy out of the time you have right now.

Peace be with you friend.

Eric

Angelia, nobody (not even you) knows what the test result will be. Listen to what Eric wrote, it makes alot of sense. The last time I was diagnosed with Stage IV oral cancer, I couldnt believe it. I had done a 25 mile bike ride the day before I was diagnosed. It was the best I had felt in 3 years. So please stop panicing, relax and take it day by day. Stop letting cancer rule your life. You are wasting precious time and energy over something that you have no control over. You are in my prayers.

Hi Angelia,

I am hoping that a lot of what you are experiencing is the tongue just healing and the tissue sloughing off. I lost almost of of my tongue but others who have more tongue tissue from what I've seem here seem to go through a longer period of having things change with thier tonge from the assalt of surgery and radiation. It really does a number on the body- especially the radiation. I often get little nicks and sore spots from being too bold and eating foods that are crunchier than I should- and or eating them too fast.
Its hard to adjust to this new life.

I know how difficult it is to endure constant uncertainly. It is just awful and nothing can help until the doctors say everything is OK. I understand completely.

You hang in there and try and relax. I still use warm salt water rinses and also half hyrogen peroxide and water to take care of any irritations I get and it seems to resolve most things that used to freak me out.
Maybe that could help. I find that it feels good and keeps my mouth cleaner and my gums healthier too which is hard to do without a tongue.

You are in my thoughts and prayers. Hopeing you start feeling better physically and less worried about things too.

Big hug to you

KATE

I wish there were

Oh Angelia, I wish I could just give you a hug! Try to be positive girl, don't let the worry consume you. I'll be praying for you and your results.

I will be keeping you in my prayers. I had a biopsy right before the holidays and found out the results of that right before Christmas and the results were positive. But that was also the year my brother, sister in law and nephew came home for Christmas so it made for a great Christmas. Stay positive and I am sure you can find things to try to keep your mind off things. I know that can be hard when you are in pain.

Keep us posted

So not trying to sound rude or offensive in anyway, but sometimes, the more you look, the more you find. And the more you think and worry about things, the more severe they can seem and hurt.

I had my cancer on the back right side of my tongue, and it looked like i was chewing on my tongue. But that wasn't my cancer, my cancer was in my tongue, and could not be seen on the surface, it was pushing inner tongue tissue out, which was what the ridge was that was scarring.

I will say this though, mine did hurt quite a bit once it showed up. But so did the infected lesion i had on my tongue that lit up on my scan as well. Anything abnormal on the tongue is painful. Everytime you get those damaged taste buds, the ones everyone calls dead taste buds, the ones that turn white, those kill for a few days till they subside. Every time i get a biopsy it hurts. It's a very sensitive area!

But I will also tell you this. My 3 month scan, I had 5 areas that lit up on my Pet/CT scan for hypermetabolic activity. They biopsied all areas, and 3 came back as inflamed salivary gland tissue, and 2 came back as nothing.

So just because areas lite up like that, doesn't mean it is cancer. Can be inflammation, infection, or any number of things, but also could be nothing as 2 of mine were.

I know it's tough, but try not to worry so much. I know for me, the more i worry, the more pain i have and the more abnormalities I find. The mind is not nice when you are scared and sometimes makes things much worse then they really are. Not saying that is what is going on in your case, but saying it is a possibility.

I had to wait from november when i found the spot on my tongue, until march when they finally biopsied and diagnosed, the whole time me pushing the docs to biopsy, but they kept saying it wasn't cancer, and i was too young, so I know very well about how badly waiting sucks. But try to not worry so much, and try to do things to get your mind off of it, until your results come back as a definitive positive or negative.

Hoping for negative for you!!