hi, new here not real sure how to start.Here goes I'm 43 male chewed snuff most of my life,back in about march I seen my gums pulling away from my tooth got scared and hoped it would go away,but it didn't.So around sept. went to get checked after lymph node begain to swell.Got sent to oral surgeon,he seen bad root canal and was draining so pull tooth.Had no other real signs of oral cancer,the swelling on lymph node wouldn't go down so was sent for ct scan,just came back as a enlarged lymph node.I was sent to a e,n,t doctor he looked around and put me on clindamycin.In two weeks the swelling got red and infected,was sent to get drained.After surgery said every looked good didn't see any cancer,but sent out a bio,and that came back as squamous cell cancer.Today is Tuesday have all me test tomorrow to see how bad things are.Kinda scared,and not sure if its a good thing he didn't see any cancer or not
Welcome to OCF! Im very sorry to read about your diagnosis! At least you are in the right place to get info and support to help you thru the upcoming months. It can be a long road but stick with us and we will help you get thru everything.
If you havent already done so, please do your very best to quit using tobacco right away. Why make things worse? I know its not easy but you can do it!
You will have many tests and doctor appointments before you know what your treatment plan will be. Until then, think about heading to a major comprehensive cancer center (CCC) for at least a second opinion. Also eat all your favorites now. Your ability to eat and sense of taste will probably be compromised for a while so eat now, especially if you are on the slim side its time to bulk up.
If any of your friends and relatives offer their assistance, write down their name and contact info and tell them when the time comes you need a hand you will contact them. I believe people are good and want to help but often they dont know how. Some who werent too close will become your new BFFs while others will fade into the woodwork as its too much for them to handle.
Feel free to ask questions. We are in your corner.
Best wishes!
Welcome to OCF. Its a scary time, mainly because you don't knkw what to be scared of. Don't look too far ahead, and stop Googling, you'll just scare yourself. When the results come in of what you have, what stage, whether you are HPV positive, and what the planned treatment is, you'll have a better idea what you're facing.
We're not doctors and every cancer journey is different, but many of us have been over the same bumps. Let us know how you're doing and we'll help in any way we can.
yes google is a scary place to be.I have stopped googling,just hate the unknown.Dont if a good thing or not but I don't have any of the signs of oral cancer even after having teeth pulled my mouth has healed fine just makes me kinda hopeful but little more scared that it could be from other parts of the body
Welcome to OCF! Sorry to hear about the biopsy results. I have heard of them missing cancer but never heard of a biopsy finding cancer cells and that being incorrect.
Because you can not see it has no bearing on whether you have it or not. If the biopsy found cancer cells in the you nodes have it.
So you need treatment - surgery or radiation are the only sure ways to kill cancer. Chemo can help reduce cancer and kill some microscopic cells but it is not considered a curative therapy.
You will be facing more tests and treatment planning sessions. The main thing is you want to face this and get it fixed so hang in there! Stay off Google and read everything here as it is solid and accurate information.
Good luck!
Don
Wasamason
Make sure you do follow up with this. I'm not trying to scare you but even though you don't feel anything doesn't mean its not there. My mother had dental work done and it wasn't found either. It was Ear pain that brought her to a ENT specialist and it was detected then. On my mother it started in the rear left jaw.
Its best to attack this in the earliest stage possible. Make an appointment with a "Head & Neck" Oncologist for a second Opinion.
Good Luck
Heidi
yes I have pet scan cat scan and mri all going on tomorrow wed 19th ,but have to wait till Friday to see the Dr to go over next step.From what I hear kinda glad im close to Pittsburgh near the Hillman center,the ent Dr im seeing is tied in with them.Should be in good hands
Good luck on the scans and remaining diagnostic/staging work as your treatment plan is being developed. It sounds like you are pleased with the care team and that's a huge part of the journey.
Things will start moving fast. Fasten your seat belt.
pleased yes I guess so,never put my life is someones hands like this.Getting ready to leave for a fun day of scans,I'm sure everyone of you guys felt this feeling of not wanting to know but knowing you have to find out how bad or good things are.I just want to say thanks haven't been on here before but the little I have is helping me,just from reading,and these little chats..THANK YOU!!
Good luck today!
We are in your corner, on your team so feel free to ask questions. We will always do our best to help you.
I just have so many questions about life after surgery,if I do need jaw replacement,skin grafs.How was everyones lives changed,pain you have or other problems that might come about.Sometimes sitting here reading posts make you feel better, then others really scares me.From what I see in my mouth don't have anything on my tounge,and looking at ct scan I had about a month ago don't see any lumps or bumps around wind pipe.The only thing my e,n,t Dr would say without test back is he thinks only in 1 spot,and maybe went from cheek to jaw bone.I know I will get all answers tomorrow but my mind is everywhere now.I think im done with my rant for now..thanks for reading
Try not to get too far ahead of yourself. Focus on what you have control over and avoid "what if..." thinking as much as possible. Not knowing what the future holds can be very unsettling. There is a good life after OC, but its just like anything, it is what you make of it.
You really are ahead of the game by finding this site. Read and educate yourself about your disease so you can be a strong advocate. If you click on the small blue Oral Cancer Foundation toward the top left you will find the main OCF pages. Its full of important info every OC patient should read.
Best wishes!
well today is the day I hear about my scans,hardly slep last night up every hour.Got up at 4;30am made fire and coffee trying to do normal things. Have to get my mind off this so going to log off maybe go for a walk on this cold morning,still dark best part of morning I feel,and when birds start singing,have a good day all
wasamason
Don't stress yourself out over this. What ever the scans bring , you will get through it. There is always someone here to help you with any questions you might have. Think positive .
Best Wishes for you and your appointment today
Heidi
[quote=wasamason]well today is the day I hear about my scans,hardly slep last night up every hour.Got up at 4;30am made fire and coffee trying to do normal things. Have to get my mind off this so going to log off maybe go for a walk on this cold morning,still dark best part of morning I feel,and when birds start singing,have a good day all [/quote]
Hang in there, buddy. We've all been there, some more than others. As the information becomes available, keep some good notes. I know it's all a blur and yes, there will be some sleepless nights. Don't be afraid to seek out a psychiatric oncologist if you think some therapy or meds can get you over the mental hump. Many of us found relief from that.
Normal? That may be the most elusive concept you've ever seen, for a while, at least.
Best wishes for some smooth sailing. Lean on us when you need to or want to. No question, no thought too small.
Okay maybe I read too quickly. I know you have a history of chewing snuff, I know you said something about the gums pulling away but that it would get better.
Where exactly did the biopsy come from? Was it your node? Or an area of your gum?
If its gum then likely Surgery is part of your immediate future. I would hope gum, jaw and a neck dissection.
If it was the node and no cancer was detected in the oral cavity - then it might be a BOT or tonsilar cancer (different treatment)
Either way good luck on your scan results... take care and be well
well the the news yesterday,stage 4 in right lower jaw. Stage 2 in lymph node only one.Pet scan showed no other cancer in body,all on right side of mouth. Meeting with Dr. Monday to go over everything.Almost had to leave the state cause of my insurance I have,but with hours of phone calls found theres a cancer clause for 5 yrs.So we are able to stay in state for everything,should make it little easier on my wife
You have a diagnosis and preliminary staging so you at least know what you face going forward. Sounds like things are moving along pretty quickly if you have another meeting scheduled on Monday.
Try not to attend along any of these meetings as the extra ears make a big difference to what is being explained.
Ask about tumor board or other means to get other review of the diagnosis. A formal second opinion is a standard method but a solid tumor board is good too.
Good luck
Wasamason
My mother had stage 4 in her lower left jaw and she had the "Mandiblctmy" Surgery . This is removal of the jaw bone. In my mothers case only the left side was removed not the entire jaw. The cancer had actually ate through my mothers jaw bone like termites eat wood. This had to be going on for quit some time and she didn't even feel it.
Lets just see what will be recommended in your case. you should try not to panic to fast. What ever needs to be done don't worry you will get through it.
Feel free to ask any questions you may have. Many members here will be with you along the way.
Best of Luck
Heidi
have to ask another question,I know theres a few here that had half bottom jaw replaced.Just wondering how long the rehab. was for most.
That type of surgery is very complicated. I've seen some bounce back in a couple months while others take a year. Too many variables make your question difficult to answer.
Well meeting with plastic surgeon on the 10th. Surgery is on the 30th. In the mean time I'm going to be doing a trail. Its a immune system boost and chemo they say it helps after surgery. There the professional right. Hope it works out