Hi there,

So, I am 37 years old. At 24 and 25 I had Stage I Tongue Cancer. Both times had them removed surgically and that is it. Well, 12 years later I am now Stage II, need to have part of my tongue replaced by skin from my wrist and will probably need radiation. Never smoked, drank, chewed tobacco. It is interesting because each incident has followed a period of great stress for me. I guess this is a wake up call that I need to take better care of myself. Pretty scared. Very happy to have found this board!

I am so sorry you are having to deal with this again. I was 38 at diagnosis. Drank a bit & smoked on occasion, but less than the number of cigarettes they determine for one to be a "smoker". I had precancerous cells & 4 surgeries in the 10 years prior to my cancer diagnosis.
I has surgery in Sept 11 & finished up my radiation by the end of the year. It was difficult- but I have resumed a very normal life with a few "new normals". I am 7+ mos out & feeling great with clean scans & check-ups.
I was also treated in NY by a great team at MSKCC.
I am very suspicious that pregnancy related hormones caused the cancerous change... I'll never know for certain, of course, but it's definitely my feeling.
Good luck to you. This wonderful group of folks can help you & guide you. The support offered on this site is an absolute gift!
Stay strong! You will win this fight!!

Sally

Welcome to OCF, Curly! So sorry to hear you are going thru another recurrence. Glad you have found OCF to help get you thru everything. You will find tons of info and support both here and on the main pages.

There are many members who are HPV- and are non tobacco users. Some people are predisposed to getting cancer. In my opinion your mouth area could just be the weakest spot on your body so thats where you get it. It could be genetics or who know what kind of environmental issues, trauma or a million and one other reasons for the cancer to grow. No matter why you got it the important thing is to get rid of it and then you can move on with your life. Im another 3 time oral cancer survivor.

If you are not already being treated at a NCI cancer center I would suggest checking it out. They use a team approach to get all the specialists on one page and discuss your individual case. They are more experienced and see more oral cancer patients.

While you are waiting to begin everything, I would suggest focusing on your nutrition. Eat everything you can now and drink plenty of water. You want to go into this in good shape and have no regrets or cravings for certain foods. Your sense of taste will likely change for several weeks possibly months where foods you love wont taste like what you would expect. Dont worry yourself about calories or gaining weight, its ok to add a few pounds especially if you are on the slender or average size. Its not easy going thru radiation especially after having tongue surgery but it can be done and the better your nutrition/hydration the easier you will get thru this.

Best wishes with everything.

Hello... You and i are very similar - except for age... I was older when diagnosed at stage two. Id had a problem with my tongue for years before hand though - blessedly it didn't start to move until after they biopsied me (from0 a 1 lymph node in record time). The surgery I had is exactly as you described it. But I had 40 lymph nodes removed as well. The surgery is not a bad recovery usually just several weeks but radiation has a lasting impact. Though it's hopefully curative. Good luck.. I'm almost 15 months past radiation, and doing okay. I think being a non smoker, non drinker, etc... Definately aids in recovery. Good luck with your surgery.

Dear Curly,

I'm sorry that you are dealing with this beast yet again, especially having started out so young.

My surgeon told me that "Usually A + B = C, but sometimes A + B = D, and you don't know why.".

That was (and still is) difficult for me to accept. I want to know WHY and HOW I got my cancer, but that's not the way science and medicine always works. Sometimes, it's just the perfect storm and you end up an oral cancer patient, without having any obvious cause.

All of that being said, I am very glad that you found us! I wish you the very best and putting this disease to bed for good! Please keep coming back for support. There are wonderful people here, with a wealth of knowledge, experience, and hope. You can do this! It won't be easy, but it's doable. Life can be good on the other side of treatment.

Take care,
Kerri

Thank you so much. I am scared, particularly about radiation. I just had a close family member pass away two months ago, so for me I do think stress has had alot to do with it. They are giving me a trach as well during my surgery which I am not too thrilled about.

Hi Curly,
My cancer was very different but I just wanted to say that I feel stress causes alot of illnesses. I also had a trach and for me that was the hardest part of all. I was elated when I got the trach out. The radiation is harsh on the body and does have long lasting effects. But everyone is different and treatment is leaves different effects on each of us. I want to welcome you also to this site. I have gotten so much out of it I can't even tell you.
Robin

Hi Curly,

I personally can not speak to what you are going through, or will go through with surgery, but having been a caregiver to my mom during her battle with oral cancer, I learned a lot. She was very scared of the trach as well, and while it took a day or two to get used to, she did very well with it. Do you know how long you will have it? My mom was lucky enough to have it taken out before going home, it was removed about a 8 days after surgery, and it healed pretty quickly once she was home.

When is your surgery scheduled for?

Ask for a Possey Muir valve trach. I am not sure who the right person would be to ask. Make sure you tell your doctor and also their nurse plus every single person you meet at the hospital tell them about it too.

A Possey Muir valve trach will allow you to talk. I know you will struggle due to having your tongue operated on but if its at all possible for you to talk with this type of trach you will be able to. I had one when I had my mandibulectomy and I was able to speak while I was in the hospital. i didnt have any of my tongue worked on but I had 1/2 of my lower jaw removed. I felt much more relaxed knowing I could speak up when I needed to instead of having to write things down. I think this would be helpful to you also.

Hi Curly!

Welcome to the club but I really wish you didn't have to be here!
I was diagnosed at 33 and now I am 39. The surgery is tough and teh treatments are brutal but you will get through it. The trach wasn't fun - and I was also estatic when it came out. I understand your anxiety. Its doable though. Get lots of pretty scarves and once the swelling goes down they will remove it.

It will be hard for a little while but you will figure things out - Your body mind and spirit will adapt and adjust.

Stay strong and positive and try to just let go and let the Drs. do thier thing to make you well again and get rid of this awful disease once and for all!

Life will be good again!! Promise.


KATE

Thank you all so much. They are getting rid of the trach before I leave the hospital. My mom had a trach so unfortunately I know all about it. Feeling a bit better today. Just taking it one step at a time.

You will do great! I know it seems hard to believe, but the surgery will be over before you know it and you will be entering the next phase of recovery. Glad to hear that you won't have to go home with the trach. My mom also had the one Christine mentioned, where she could speak with it. It made such a difference! Do you have a good support system to help you through this? I was my moms primary advocate while she was in the hospital and even though I know the nurses did everything they could, it really helped having a family member present.