I have a question, again, went back for my pet scan and cat scan. I was told I have some "spots" that they want to do a byopsy on. This is terrifying to me, since this is my 3rd run with cancer. The "spots" are in the left groin area and above the kidney. Now my doctor stated that this is very unusuall, since oral cancer tends to show up in the lungs or liver. Has anyone had anything like this show up? Also they have put metal to hold the bone together until it heals for my jaw. I had it removed in Feb 04. I cannot open my mouth hardly at all. However the speech therapists expects me to do all these things,,,how??? I still have my trache, for I had my lifetime dose of radaition before my surgery, so it is taking 5 times, it seems, to heal..anyone out there that has something like this, please help me with some questions. I hate the trache, but I cannot cough up the flem thru my mouth.Since almost all my tongue is gone, I cannot push it on out. This is what they are waiting for me to be able to do before they remove the trache. My neck is so stiff from the trache, not being able to move it around freely. I really need some input..all the doctor tells me is that I am doing great and for me to hang in there....I want the truth....Vicki

Vicki, I can't answer your questions but I can pray for you. You are such a strong person, God Bless You! Carol

Vicki
I'm not sure about the metal in your mouth, but I was in an auto accident w/a drunk driver about 10 years before my cancer. At that time they wired my mouth closed for about 6 weeks for all the broken bones in my mouth to heal. It was just like any broken bone. If you don't use it, it will become stiff, and you will need to have therapy to help loosen things up and work again. I had utrasound waves used on my joints in my face and then hot towels to help loosen those joints, and just try like crazy to open as wide as possible. I would just keep bugging your therapists for extra help.

Hello Miss Vicki,

You absolutely have to hang in there! I didn't have Quite the same treatment as you so I can only answer some things. Radiation will sometimes cause trismus which means you can't open your mouth. Several folks here have experienced it to various degrees. You can gently help regain the motion of your jaw a couple of ways. Ask your speech therapist about it, or hang on here and some of the others will be able to give you more tips.

Lastly I think we have all been in your shoes wating for test results. Just remember it isn't cancer until they say it is! PET scans can be too sensitive and read false positive. Several people have had that happen.

take care

Hi Miss Vicki
Hang on in there Lady.. you are doing ok.. sounds like you wanna run before you can walk..
I will be thinking of you will you await the results..
sunshine...love and hugs
Helen

Miss Vicki,

I am curious, was this your first PET/CT scan or have you had others before?

I did not have surgery but had a very difficult time opening my mouth wide for quite a while after radiation even. It is something I work on daily still and it is especially tight in the morning. I use an occlusal guard on the bottom teeth every night since radiaiton because I clench my teeth. I used to before the radiation but much more since. I consciously keep my teeth slightly open during the day or I clench them all the time.

Hang in there, you are an amazing Lady! I am praying for peace, for comfort and for healing for you! Try to not worry about what the biopsies might be but remember, it aint cancer till they say it is!

Ed

Hey Miss Vicki,
You have been through so much...I truly admire your spirit! Dan has been going to a phyical therapist for his left shoulder pain due to the radical neck dissection and his PT is also working on his jaw for trismus. He couldn't open his mouth very wide after radiation...both problems are getting better since PT began.

Take care and may God bless you!
Debbie

Well thanks to all of you, I am in no way giving up, maybe fed up,,lol,,,and I don't who it was that said I want to run before I walk..That is not the case at all. Do not judge,,,,I have had more pet scans, cat scans and MRI's than I care to admit..I have had the big "C" for 15 years..So there is no running from anything..I have to walk, no energy left to run..I am keeping my head up and high in the air..I thank you for all the info on the jaw, I dont have a speech therapist yet, because of all the swelling,,however I told them I wanted one, well I demanded, so we start next week...Thank you so much,,,Vicki

Miss Vicki,
Am sending you my phone number, ok? Call me when you have done your magic with speech therapist!
God bless
Judy U

Dear Miss Vicki
I appologise.. I know all that you are dealing with and I didn't mean to add to that load with what was I thought at the time.. an innocent remark.. it was meant to support you short term in the wait for your results.. NEVER EVER was it meant with relation to all you have dealt so wonderfully with...so I have given myself a slapped wrist.. is that OK? lol..
sunshine.. love and hugs
Helen

Hi Vicki,

I admire your strength and endurance with all you've had to deal with - you go girl! Good luck with the speech therapist. I've been seeing my therapist weekly since April and although it's A LOT of hard work, it's well worth it. Although I don't often give myself credit with how far I've come speech wise since it's hard to measure yourself, many, many people (especially at work) have commented on how fabulous my speech has progressed in just a few short months. Since you've given this cancer your all from the get-go, I know you'll do the same with therapy. Let me know how you make out. Keeping you in my thoughts and prayers, Nancy