My speech is pretty good, for the most part. When I am tired or have been talking more than usual, it gets worse. Nobody really has any trouble understanding me. Yes, oral cancer is more common than people realize. After I was diganosed i found two people just in my community that either had or have it. The woman that manages our coffee shop had it over ten years ago, on her tongue and had no chemo or radiation, and she does great, and looks fantastic. They really moved fast with me, too. I really didn't have time to think about it or have time to cry or get depressed...that came when I was finishing up my treatments. I didn't find this site until I had finished my treatments and was back to work, but I wish that I had known about it when I was going through all of it. You are lucky in that you have discovered it this early in the game.

The wiman of the coffee shop Really made ne happy right now!

Brazilliangirl,
She is just beautiful, and you would never know that she ever had anything wrong with her. She was also very young when she was diagnosed, and had two small children, who are now in high school. She also never was a smoker or drinker. She was the first person I told about my cancer other than my close friends and family. The morning after I met with my surgeon I sat in the coffee shp and talked to her and she really put my mind at ease.

John, welcome to OCF! Glad you have found this wonderful resource to help you thru this. I know its not easy going thru surgery and the recovery. Within about 2 weeks you will have made big improvements.

You are so fortunate to have caught this at Stage I. Too many times oral cancer is not found until its in the late stages. You are also young which means you will heal faster than someone older. It wont be overnight but hopefully in another week or 2 you will be back to eating almost normally again. Consider yourself very lucky being able to dodge chemo and radiation. They arent easy and have their own set of side and after effects. Your situation should enable you to bounce back and return to your life rather quickly.

Best wishes with your recovery!

[quote=David2]John, adding my welcome and support. I know it's scary. But you've got a whole pile of people here who are rooting for you and thinking about you, sending the positive thoughts!

My cancer was a bit different from yours so I'll let those more knowledgeable give you specific advice. But it sounds as though they caught it early and that your medical team is on top of it.

I would say though that having cancer is tough enough without pain and anxiety on top of it. If you're in pain, get painkillers. If you're feeling as though things are getting tough to handle, speak to your oncologist about anti-anxiety and/or depression medication.

And as you have time and energy, look around this site. The main page has links to tons of info. You'll learn all about staging in general and your specific problems.

And keep us posted. And ask us questions!

I'm glad you're alive. You're going to be for a long, long time.

Courage. [/quote]. Thank you so much. That truly touches my heart. I haven't been in that much pain and because I have a weak stomach and don't want to know what it would feel like to vomit with all this going on I avoided taking the pain pills. The morphine made me really naseaus and it took every ounce of self control I had not to vomit.

I do have a few questions. I was advised not to brush my teeth but not for how long. I have a check up on Wednesday so hopefully I can resume it then.
And do you or anyone else know how bad it hurts to have surgical staples removed?

Hi John, i cant help with the staples because i used the plastic surgery stiches. It wont be removed, it will be absorbed. Have u got a drain? If u do, i can tell its not painful.

John....I didn't have surgical staples my stitches disolved. I brushed my teeth using the swabs no toothbrush and brushing real soft until my stitches disolved on my tongue. It probably took 10 days. You can get the swabs at the drug store. I couldn't leave the hospital until the drain was taken out. My drain was taken out on the 2nd day and I was out the door.

Also use Biotene mouth wash and toothpaste. No mouth wash with alcohol ever.

You might want to try tylenol over the counter.

Did you go to a Cancer Center?

Hope this helps.

Connie

Hi there John, I was a stage 2 - one lymph node involved but only after they biopsied me. I had 40 removed 1/3 of my tongue excised and replaced - I have amazing mobility with my graft my plastics guy was fantastic. Staples? In your neck? I'm assuming. I was out of the hospital 10 days after surgery - and in Mexico 17 days after surgery - I could eat pretty much most food except dry and hard stuff and frankly I found mashed potatoes harder to eat than soft veggies fruit and omelettes if I remember correctly I was just getting back to normal 4 weeks out when they recommended radiation for me. That's when my tongue reall swelled. I used to put the food on my good side it made it easier to go down. Try rinsing with a mix of baking soda,salt and water I used to add a table spoon of each to a bottle (2 cups of water, this will help heal and clean out any junk that's stuck... I used the foamies to brush my teeth, until day 14 ten I used a soft tooth brush. I also love my water pick... On the low setting it cleans your mouth nicely - I add a bit of all natural, alcohol free mouthwash to freshen up.
Staples - I used to be a nurse - so I've been on both ends... I had invisible stitches in my neck - but my arm graft site was mighty ugly and had easily 50 staples. now something like this is very dependent on location, (more sensitive areas hurt more) and the individual, are you super sensitive to pain? Then it's gonna hurt, if your not it wont hurt much. I had mine removed prior to leaving the hospital, and the only one hat hurt was the one that was dug into a nerve. And to insult to injury they removed a patch of skin to cover my donor site (wrist) and used a thick pad to cover my wound... Which they were kind enough to STAPLE to my leg... That didn't hurt at allbut I was mildlys insulted that with all my injuries they would unnecessarily staple this pad to my leg...

Try not to worry and freak out. This is for both you and Brazilian girl. This is a small forum, we ave a lot of members but most are transient, they'll come and go once they're done with treatment. So it's not an accurate representation of survival rate. We do lose some people, But people die of heart disease, and liver failure daily. Cancer is scary, I admit - I had some seriously heart stopping moments since my diagnosis. However I got my treatment, I listened to my drs. When they recommended I go through with radiation and chemo, despite my dr who is great, saying he believes he got it all - not something I take lightly based on his credentials But I went whole hog and did everything I could to stop this disease in its tracks. I also adjusted my diet to help me heal and strengthen my immune system, I walked every say even though I felt horrible near the end. I asked questions, and did my own care - I now go to acupuncture and do lymphatic massage (this may help with the swelling too -John)
Will I have a recurrence? I have no idea, am I content in the knowledge I did everything I could to try and stop this disease...? Yes. So It is now in god's hands. I could face a recurrence, but I could also get hit by a bus, shot, or have a heart attack, so live your life now, do not be afraid to move forward, don't give into your fear of this disease, it's already stolen a lot from you, don't give it that much power. Its a part of your life, but not your whole life - if it is then it's won.
good luck, thee diligent, keep and eye out for anything unusual - swollen nodes, rashes on your neck, etc... Be active in your care. Learn what is normal for your mouth. Etc. and good luck, we're all here for you...

Hi, John.

It sounds like you have the best possible prognosis! I also had the same thing, but I still became very depressed shortly after surgery. It's a normal reaction that gets better, definitely seek out help from a psychiatrist/mental health counselor if you feel like you might need meds or one-to-one counseling. Even though I find great support on these forums, I still go once a month to a private counselor and it helps me. I was going more frequently in the beginning as soon as I was feeling well-enough to do so.

I'd say that my recovery took longer than the average, but I had a couple of things that complicated my case. Everyone is vastly different, but with many similarities. Like Eric said, you are young and did not require rads/chemo, so that will mean that your physical recovery will be much quicker. On the flip side, the emotional recovery is a longer process and an ongoing one for a cancer survivor. That's why we're all here!

With respect to the staple removal (I'm assuming you mean in your neck), it's not bad at all. It's quick and you'll most likely feel better in that area pretty quickly.

As far as brushing your teeth, I was given permission to do so while I was in the hospital, but was told not to brush my tongue. It may help to get a toddler toothbrush because it is smaller and softer so you can reach back to you molars without disrupting your tongue. I had a very difficult time clearing my mucous secretions and learning to spit again, so I had a home suction unit for about a month. I found it very helpful. I would also swish out my mouth just to help clear it out.

I developed what is called "white hairy tongue"...looks as gross as it sounds. Mine was white do to all of the smoothies and ensure I was drinking. Your tongue surface might look like a shag carpet for a while until you start to reintroduce some rougher textures back into your diet. It's harmless and mine went away slowly when I was finally able to brush my tongue and use a tongue scraper (don't do this without asking your doctor).

I hope some of this helped. Each day you will get a little better physically, but don't be surprised if emotionally you're on a roller coaster for a while. When we are diagnosed and treated so quickly, our heads spin! It's a lot to process in such a short time and I think it's harder to process for a younger person such as yourself because you most likely didn't expect to have oral cancer at your age.

I suspect that you will make a full recovery with respect to speech and eating, with time. You're already ahead of where I was at this point in your recovery. Best of luck to you and keep coming back.

Take care,
Kerri

Thank you again to everyone. I woke up today and didn't cry or panic. I kind of sat on my bed and tried some of the tongue exercises the speech therapist gave me. Then I decided since each day I'm speaking clearer and clearer I might as well try a more solid food. So, little by little I ate a piece of bread and who knew bread good be so delicious?!

Now I'm trying to work out a way I can shave most of my face without getting my neck incesion wet.

Wednesday I go for my pre-op visit. Hopefully my doctor will say radiation isn't needed or that it can be put off for a while so I can enjoy life as usual for a while.
My one wish is that because I'm doing so well so quickly I can go back to the kids I teach.