Five years ago ( I am now 42) I bit the crap out of my tongue. A year later I was at the dentist for a cleaning, and she mentions that there is some white tissue on the underside of my tongue. I told her that I had bit my tongue last year and it was scar tissue. She disagreed and recommended I see an ENT to have it looked at. I went to a local ENT, and she said that it appeared to be Oral Lichen Planus. Ok......had no idea what that was! She recomended a biopsy, to rule out cancer,and did not sound like a very fun proposition. Told her I would think about it. The next day I told her that I would make an appointment to have it done the following month. The next day I realized I should not wait. Now I understand that no one likes needles, and blades, and blood and pain, but I am TERRIFIED!!

So I sat in her chair, they needled up my tongue, and proceeded to take 3 samples. I nearly passed out from the ordeal. I could carry my childrens ripped off arm to the doc if I had to, but there is something about seeing parts of myself leaving it!

I waited a couple of days, and the results came back negative. I was sooooooo relieved. I imagined every horrible scenereo that I could face. She recommend I have periodic check ups (6 months), to have her monitor it.I met most of the appointments, but began to slack off. 7 months ago I lost my health insurance, as the premiums continued to go up, while the benifits continued to drop.A story for another forum!!

3 months ago, I began to notice a change in my Oral Lichen Planus. an ulcerated area began to have a tumor look to it. I dismissed it as something that would get better on its own. I did this for two reasons....I no longer had health insurance, and I am a scared little boy!!

Finally, 3 weeks ago I decided I couldnt wait any longer to have it checked. I called her office, and they said she had an opening in the middle of January, I told her that there was a tumor growing on my tongue, and it was sore.....they said they could see me the next day!

The doctor greeted me, and said....lets have a look....after 2 seconds of looking, she said.....we are going to biopsy that. I suspect she knew already! On the 21st of December her office called me.....Mr Anderson.....we have the biopsy results in. I was relieved..... surely they are negative, and we will see you in 6 months! .....Mr Anderson, you have Squamous Cell Carcinoma....Huhhhh.... is that cancer I asked???? Yes sir. We have tentatively scheduled surgery for Jan 4, and the Doc can see you the day before surgery. Unforunately, she has already left town, and will not be back until then. Holy CRAP! This was a Friday as I am driving home from work. I pulled over and cried. I had no idea what this meant. I imagined a slow and painful death, but when? And why??? Non smoker, non drinker!! Why why why why!!

The emotions and events between that day, and the day I met with the doc, would be 50 times as long as this diatribe, so I'll leave that for another day!

By the time I met with her on the 3rd, I had a CT scan, and blood work for surgery......a surgery that I had no clue what included.

Then came the "good" news. The cancer was t1, and her recommendation was to remove it with good margins, and also cut out the rest of the oral lichen planus. She would do a small graft if necessary, from my leg.

Last Friday, I had the surgery to have a section of my infected tongue removed. According to the Doc, it was a best case scenario. She is not recommending radiation, and wants to have frequent follow up, along with a PET scan and some more CT scans throughout the next 12 months.

I am cautiously optimistic, but realize this could be a first step on a long road. My tongue is very ugly right now, but she says it looks exactly as it should at this point. (1 week post-op) I am talking better every day, and she says in two months, should be 100%.After reading many stories on this forum, I do consider myself fortunate.

The tumor was tested for HPV, and it was negative. She believes the OLP is the facilitator for the SCC, which is basically incurable.....so I will always have to monitor, and will never truly feel cured.

Any thoughts and opinion from any members would be greatly appreciated.

Sincerely, Andy

Andy, welcome to OCF! So sorry you have had to go thru oral cancer! You are very fortunate to have caught it so early and to have it treated so easily. I know you may not feel lucky but believe me, you are one very lucky guy!!!

Im unsure what OLP means. You wrote that towards the end of your post.

One thing to know is that we all are in the same boat with the monitoring. We all get checked out and will worry forever about a recurrence. Once you have had cancer you will always run a higher risk of having it again. Try not to waste your time or energy worrying excessively about it coming back. Easier said than done, I know but yes it really can be done with some practice. I was always overly paranoid about having a recurrence so much that I wouldnt even whisper the word or read the recurrence section for fear it would rub off. My fears didnt help, I still had 2 recurrences anyway. This taught me that it doesnt help to worry, by worrying cancer is stealing my precious time away from me and my children. You sound very sensible so maybe you would be able to master avoiding the worrying easily.

Best thing to do is find the top doctors at the best hospital and put your trust in them. Going for second opinions can help to ensure you are comfortable with your choices. After you have made your selection of treatment plans, physicians, etc there is no going back so dont second guess yourself. After surviving cancer, most patients will always be vigilant about checking for any changes and thats about that can be done to be proactive.

Hope you heal quickly and can return to your regular life very soon.

Sorry for the diagnosis, but welcome, Andy. Glad the OLP..Oral Lichen Planus, a common inflammatory disease, that turned to squamous cell carcinoma over time, which is not common, was found early at T1 stage. I think you handled yourself quite well. Keep being vigilant in checking for any oral changes, as ChristineB mentioned.

Hi Christine,

Thank you for posting. OLP is Oral Lichen Planus. Though I think what it may be is Lichenoid Reaction, which presents similiar, but has different causes. Again, a topic for another forum title!

I like your positive attitude!

Hi Andy,

Well, silver linings abound notwithstanding the original bad news. It was caught very early, you had very little time to stress in between diagnosis and surgery, there was no spread to the nodes, you didn't need a neck dissection, and no radiation.

Most of those things are the biggest issues facing many with this crap disease. I too have been lucky so far in not needing radiation (yet), but I always have the the recurrence thought looming in the back of my mind. I try to leave it there, as whether I worry about it or not, I have no control over it. As a type A personality myself I am an admitted control freak...This process has taught me that there are some things out of my control, so I focus on what I can do - I quit smoking, eat healthy, follow doc's order, etc.

There may be times you feel down - I had a bout of that a couple of weeks ago. Don't discount that, it's a tough thing we've all gone through. I came here for help and got it. That's what this place is fantastic for...support when you need it, even if it is just a sympathetic ear or a kick in the ass.

Keep posting, and keep us updated!

Hi there welcome - my story is similar to yours - except my tumor was larger when discovered as it presented inside the tongue and the only indication of a problem was redness - not a sore or tumor on the exterior - often times this presents in the lymph nodes as well so they tend to do neck dissections - not to scare you but microscopic cancer can sit in the nodes undetected by a ct scan or MRI. Chances are this is it and you're done - but do follow up and do keep an eye on your nodes, if any of them swell hgh tail it back to the drs. Immediately. Hugs an best of luck!

[quote=Andy Anderson]
I am cautiously optimistic, but realize this could be a first step on a long road. My tongue is very ugly right now, but she says it looks exactly as it should at this point. (1 week post-op) I am talking better every day, and she says in two months, should be 100%.After reading many stories on this forum, I do consider myself fortunate.
Sincerely, Andy [/quote]

Hi Andy! Sorry for your diagnosis, but as you and others have said, yes it is (WAS) cancer, but is now gone without further treatment. Others have already given you good advice, so I just wanted to address what I quoted above. When my cancer was removed, the Dr used artificial graft on the tongue and my mouth looked like hamburger. Okay, maybe not like hamburger, but in the early post-op period (up to 2 or 3 wks post op) I thought there was NO WAY it was going to heal and remotely resemble a tongue. I was wrong. It healed very well! My Dr kept saying the same as yours did (that it looks just like it should) and I was doubtful, but apparently his training and experience is more accurate than my opinion (who knew?? ;-) ). It took a while before my "lisp" or sloppy speech improved enough for my own mother to understand the difference between sack and shack, but I got there. I actually went to speech therapy when the improvement stopped or slowed down, and 3-4 weeks of that greatly helped. Now, a stranger would never know I'd had tongue surgery, and even close friends and family say they can't tell. I can tell, but maybe its more of the way it feels. Sometimes it just feels "sloppy", especially when I'm tired.

I look back and actually appreciate that the time between diagnosis and surgery for me was only 10 days. I had a flurry of appointments (PET, lab, MO, CO, ENT again) in that time. I'm afraid I would've researched myself into a frenzy if I had more time.

Good luck in your recovery!
:-)
Teresa

Hi Theresa!

How big was your first and second tumors? I see you went over a year between the first and second diag! That must have been very disheartening! My doc said the first 12 months are very critical in terms of recurrence.

Thank you all for the support and information. I really can't explain the difference between knowing about cancer, and knowing you have had it. It is monumental!

Andy,

Unfortunately we see many just like you that get this cancer without any suspected or known causes. Do stay vligant and get regular checkups by qualified practitioners and do pay attention to the slightest changes in your oral cavity. SCC is very agressive and often persistant.

[quote=Andy Anderson]Hi Theresa!

How big was your first and second tumors? I see you went over a year between the first and second diag! That must have been very disheartening! My doc said the first 12 months are very critical in terms of recurrence.

Thank you all for the support and information. I really can't explain the difference between knowing about cancer, and knowing you have had it. It is monumental! [/quote]

Hi Andy,

I only had the one tumor. Pathology revealed 3.5cm tumor removed; none of the 35 nodes removed were cancerous. I had surgery only, no further treatment. So, I feel very blessed.

It has been over 4 years since my diagnosis and if all is still okay at my next 6 month follow-up appointment in March, I can finally either see my ENT once a year, or not at all. My choice he said. I lean toward seeing him once a year. I like him; I trust him.

Before my diagnosis, I was a bit educated on cancer as my grandmother had cancer twice, my mother once, so I thought if I got cancer, it would be breast or ovarian, like they had. Now tongue cancer?!? Where'd that come from? Who knows. But, as I said before, I feel lucky/blessed.

Keep healing! It will get better each day.
:-)
Teresa