Hello my name is Paul,


This August I notice a pain on the left side of my tongue. My first thought was a canker sore, and I tried the my usual OTC medication--which usually gets rid of them. After a couple weeks of no results, I went to my PCP, and he prescribed Lidocaine, after a couple weeks of that without results I went back to my PCP. He then prescibed Tetracycline which had the same effect. So on my next visit, which I was prescribed another antibiotic, I ask to see a specialist.
I saw the specialist on Nov 1st, who took a biopsy. November 7th my results cam back as cancerous, and I went in for a CT scan Nov 9th, which thankfully came back as limited to my tongue. My specialist is now scheduling me to go to either Dana-Farber in Boston, or Darthmouth-Hitchcock in Vermont, to have surgery and begin treatment.
My wife and I are trying to stay very positive. If anyone had any suggestions on how we can prepare, and some positive stories about survival I could really use it. Just turning 27 and having a newborn of 3 months, I have a lot to live for, and will do what it takes to see my son grow up. Thanks for you thoughts and time.

Paul a.k.a novalty

Hello Paul, Welcome to the OCF. I am sorry to hear about your tongue and upcoming surgery and treatment, but you are doing well, staying positive, you are so young and with your newborn, you will be even more stronger.....God Bless You, Carol

Welcome Paul, I'm sorry you have been diagnosed at such a young age and with a young family. There are others here who have survived tongue cancer and will support you on your journey.

Have you read the information here on the main site? You will find it helps with understanding the treatments etc that you will have.

Keep posting and asking questions. People here understand what you are going through both physically and emotionally.

Love from Helen

Welcome Paul.

I am a tongue cancer survivor. As you can see in my signature I was stage 4 Base of Tongue and had a radical neck disection. Things are going to get rough for you over the next several weeks my friend but all of us are here to help you in any way we can. Everytine the going got really rough I would think about my wife and children and how hard they had worked in supporting me and caring for me. I would then think about this... if I give up, what will happen to them and you would be surprised how that in itself will keep you going on my friend.

If you need to please feel free to private message me here or you can email me if you would like to. My email address is in my profile.

All the best to you my friend,
Billy

Hi Paul,

I spent my first 28 years in Maine (I'm 46 now) and boy do I envy you for living in that beautiful state! What part are you from?

You can beat this just as many others on this board have. Try to get to Farber if you can.

Take care,
Minnie

Hi Paul,

My son was 21 when he was diagnosed. He's 22 now. His experience was a lot like yours. His family doctor did not want to believe it was cancer because of his young age and lack of risk factors. It took three trips to his office and about six weeks before he realized what my son was dealing with.

Things are different for young people with this disease. You have the possibility of a very long life ahead of you and your doctors will need to keep that in mind as they plan your treatment. Because of that, you really should go to a big cancer care center like Dana Farber, where they have probably treated more patients close to your age.

As for things you should do to prepare ... Eat! You will probably have a period after surgery where eating solid food isn't possible so it's a good idea to get some extra calories in while you can.

Always take someone with you to doctor appointments. Hearing a bunch of new stuff at once can get confusing.

Take advantage of any financial or other assistance you can get. Check with your local cancer services office and at the hospital. Having an infant is expensive -- so is cancer.

Speaking of assistance, let your parents help you too. Just because you are married and a father yourself doesn't mean they should no longer be there for you. Just think what you would do for that tiny son of yours ;^)

My son is surviving. Like you, he had a tumor on his tongue. He had that removed and had a neck dissection to check his lymph nodes for cancer in June. (The nodes were negative, yay!) I won't tell you it was easy, because it wasn't. There was some pain involved and learning to eat and talk with a kind of patched together tongue was not fun.

He had additional surgery a month ago, just to move things around in there to make his swallowing and talking even better. Again - not fun, but he thinks the results are worth it.

And we're all (him, me, his dad, his sister, his fiance, the doctors, family, friends) very, very hopeful for the future.

Best of luck to you,

darcy (Matt's Mom)

Hi Paul. Please read my story, in this forum.
2 years cancer free / happytobealive.
I am tongue cancer free now for 2 years,and things are fine. DO NOT GIVE UP.
Thomas in Calgary, AB.
Cheers!

Hello, and thank you all for your advice and support. I am scheduled for a consultation with Dr. norris at Dana-Farber next Tuesday. From there I will find out what course of action they will suggest for the treatment. Thankfully i have a lot of family and friend to be there for me, and I am glad that my infant is to young to have to cope with me going throught this at this point. The pain is starting to increase in my tongue now, so I hope they will get me in soon after the consultation.

Paul a.k.a novalty

Paul,

It is good to hear that you will be going to a comprehensive cancer center. When you are given a treatment plan, let us know. There will surely be many here that can give you guidance from the patient's and caregiver's point of view. No matter how wonderful your doctors and nurses are, if they haven't been there themselves, they will surely have a different perspective on things than we do.

As you can see by my signature, I too had a scc on the left side of my tongue and am living life to it's fullest, 2.5+ years later.

Good luck next Tuesday.

Jerry

Hi Paul,
Just a thought-as a primary caregiver to my mom, this site has been my saving grace. It has helped me figure out different things that were happening when my mom really wasn't able to tell me, because she didn't fully understand. I would encourage your wife to log on and read, and ask questions...you never know what advice someone could offer that just may be what you need-not to mention what she may need. Being a caregiver is sometimes quite a job, I can't imagine having a newborn to contend with too. Please don't misunderstand, sometimes you get tired and can't think straight--most times I needed someone, all had to do was come here and open arms were always available-with lots of knowledge. Best of luck to you and to your family. What are your wife and baby's name?
I'll be thinking of all of you!
Donna