Hello. I am a healthy 38 year old wife and mother of 2. In August I discovered what I thought was a canker sore on the right side of my tongue. It felt uncomfortable to stick my tongue out at times, especially while flossing my teeth. I didn't think much of it, as I first noticed it while we were on vacation, but made an appointment with my doctor when we got back. I actually saw the PA at my doctor's office who tested me for thrush and gave me an oral rinse. A week later nothing had changed and the tests came in negative. She sent me to an ENT who immediately felt my tongue, since by now I had a lump, or what I thought was inflammation, and said that I needed to forget about this being herpes. He initially thought it was a benign salivary cyst or tumor and sent me for an MRI. We couldn't complete the MRI because of a dental implant on one of my lower right molars that skewed the view. I then had to have a ct scan which still was partially obstructed due to the implant but showed that this wasn't a cyst. A needle biopsy was performed which came back as epithelial moderate dysplasia. By now just 3 weeks had passed but it appeared that the tumor had grown from 2 to 4 cm. The doctor said that unfortunately, the surface area was beginning to look like SCC. Knowing the approximate size of the tumor I knew I was stage II. This was a Friday, and surgery was scheduled for the following Tuesday.

Surgery on 10/2/12 confirmed it was SCC. Pathology showed it was stage II. The tumor itself was 3x2.5x2 cm and he removed 7 cm of tissue along the right side of my tongue to the back of my tongue and back of my throat. I am HPV-, which was disappointing as I hear that HPV tumors tend to be indolent.

Today, I meet with the oncologist to discuss the next step. I am not at risk, as I see so many of you are. This is so frustrating! I never smoked, I drink socially. I eat mostly healthfully, exercise, take good care of myself, enjoy my life as much as I can. The ENT believes that the irritant that caused my tumor to grow was the dental implant. He believes the friction of my tongue rubbing up against the implant may have caused this. I'm still grappling with that knowledge, that I paid so much money to fix my tooth only to get cancer.

Everyone says I am handling this remarkably well, and that it's amazing my speech is so close to normal given he removed about 20% of my tongue two weeks ago. I am glad to know that I am doing well. I have no choice but to keep looking forward since I have two little ones at home who need me. Let's see how I handle the oncologist's news later this morning. I would appreciate your good thoughts.

Thanks for reading.

Hi there

You would be surprised at how many young, non-risk factor people end up with this nasty disease.

Glad to hear you are recovering well and I wish you all the best on the next phase of your treatment plan.

Kind Regards
Jay

Hi Katie - So glad you found this forum! It's the best place to be for all the latest, accurate information and lots of support from people with experience similar to yours. My son (non smoker) also had SCC under the right side of his tongue and had 1/6 of his tongue removed. THis was followed by radiation. His ENT is known as being very aggressive in his treatment and wanted to make sure there would be no recurrence and so far, almost 6 years later, he is doing just great! He was also told that if his SCC was HPV related, that it would be a lot more successful in recovery but he did not have the HPV test to tell for sure. You mentioned your ENT's belief that the irritant caused by your dental implant may have caused the tumor to grow and from what I've read here, it does seem to be a possibility. I'm sure others will be along with much more recent information for you. Meanwhile, if you check out the main pages of OCF, there is a lot of information that can help you decide on questions you can ask your doctor or for anyone here. Do check back here often and let us know what's happening with you.

Katie,

Unfortunately you are at risk as you say as we see a lot of people just like you with the same presentation, i.e., non smoker, young, either sex, casual drinker with forward tongue HPV- SCC. It is just as agressive as that which can be linked to tobacco and to date no one has determined a cause. Please get multiple opinions if you need to, especially one from a NCI designated Comprehensive Cancer Center. We will be with you for as long as you want us to.

Katie, welcome to OCF! This is the best place to come for info and support. So glad you have found this site!

Sorry to hear what you have been thru. Wishing you good news at your appointment today!

Hi Katie - your story is the same as mine - right down to the dental implant issue. For a long time I've believed that that was the cause of my scc - Did they do a neck dissection? The speed your tumor grew - tells me it's aggressive.. A neck dissection for this type of tumor - even if there's no lymph node involvement is very common as sometimes nodes don't pop up until later since there may be microscopic cancer that isn't apparent at first.

If they recommend rads and chemo take it.

Best of luck and take care.

Katie, sending all my good vibes your way. We're here to help.

Hi Katie,

Sorry to hear that you have it.

I was diagnosed with tongue SCC last month and had my surgery last monday and am recovering now. I am 25 y.o. non-smoker, I don't misuse alcohol and generally eat healthy food... there are people who smoke and drink for 50 years and don't get any oral cancer... you never know..

i think cancer is about our inner state. my last year (or two years) were extremely stressful that i think have resulted in this nasty desease.. we should live in harmony with ourselves and not to worry too much.. then all deseases will pass by

Welcome Katie!

I was 10 years younger than you at diagnosis with three little ones. Never drank, never smoked, never dipped, HPV-, in fact was under the care of dentist for treatment plan for the past 4 years prior to being diagnosed. I always had some type of dr treating me and yet, it was missed and I was stage 4.

Please keep us informed on how your appt goes, so many wonderful people are on these boards. We'd be glad to help you in any way possible.

Thanks to you all for responding to my message. I am sorry we are all here but am grateful for the support we can provide each other.

We liked the oncologist who requested we have the hospital's pathology department send my slides to his office for further study. Once he's taken a look at those he'll be able to determine exactly how much more tongue to remove. He suggests doing a selective neck dissection at the same time, which we agree is necessary. We didn't discuss radiation or chemo yet as we won't know what's what until the lymph nodes are checked. More waiting after surgery. Grrrrr....

I have help in researching all that needs to be researched, because all I really feel up to doing these days is that which I can control, which is my normal routine with the kids and my husband. My family and friends have been terrific in keeping calm and being the brains for the research I find overwhelming.

I look forward to reading more of the posts on this site and getting to know some of you better.

As a neighbor said, I am a cancer kickin' warrior! Keep up the fight!