Hi,
I have been searching this site as well as others for the last few days now. I can not seem to find anyone with the same specific problem or diagnosis as mine.

I am a 37 year old female. I am married with two kids. I have been with my husband for the last ten years. I am not a smoker or a drinker. About a week ago I had a suspicious white legion removed from the lateral right side of my tongue. (not the tip or the base) Neither my dentist or oral surgeon thought anything of it. Neither did I. He removed about 1cm x .7cm x .2. Five years ago when I was pregnant with my first child, the oral surgeon found what he thought looked like lichen planus in the same spot. Due to pregnancy, he did not biopsy this. I understand that this is an auto immune condition. Time went on, I think it remained for a few years, but I went on and had a second child almost two years ago. I see my dentist faithfully every six months. No one mentioned the lichen planus in a while, but suddenly in about a months time, in the same place, there was the appearance of this new lesion which was more concentrated in color and size than lichen planus. This is the lesion that was removed.

Needless to say, the oral surgeon and my dentist were stunned when the lab. report came back with a dianosis of:severe squamous dysplasia/carcinoma in situ with severely dysplatic tissue extending to the margins of legion."

Of course I scoured the internet to learn what this all means. I am so confused. I have an appointment with a surgical oncologist who specializes in ear nose and throat. This is two weeks away. In the mean time, I have been told by my dentist, oral surgeon and a medical oncologist that this is serious and needs to be taken care of. I was told it is the same dysplasia found in the cervix, and it is most likely caused from HPV. Now for my questions:

17 years ago, I had cryosurgery to remove abnormal cells from my cervix. I was young and did not ask any questions. HPV was never mentioned. It may have been before they found the link between cervical cancer and HPV. I have never had an abnormal pap smear since.

Could the carcinoma in situ on my tongue be caused by the same virus as the cervical dysplasia I had so many years ago. Or, is this un-likely to be the case.

Is there a chance that the new diagnosis in my mouth could have been caused by the lichen planus? I am just having a difficult time with the idea that it is HPV related. I am a responsible, hard working woman. I have 14 years of teaching and again, have been with my husband for the last ten years. If it is HPV, and not related to the cervical dysplasia 17 years ago, than where would this new infection come from? The thought is just so disturbing to me. I can accept any other reason. And like most people, I am sleep deprived and under stress, which from my understanding can compromise the immune system.

I am sorry to be so lengthy in my message, I just did not want to leave anything out. Any insight or advice from the DR. or other members is welcome.

Thank you so much and good luck everyone!
scooby
Original Post
Hello Scooby

A very tiny percentage of lichen planus lesions can over many years turn into a SCC. HPV tends not to present as a white lesion. The HPV virus is cleared in the majority of cases and sometimes it lies dormant for years. I would advise that you not loose sleep over an HPV cause as it is unlikely to be the cause in your case. You need to keep your energy for the treatment ahead. We are here to help when you need it.

Best wishes
Vinod Coffee
patricia,

Thank you so much for your encouragement. I am very fortunate to have it diagnosed very early. Because it is/was contained to that one area, I think the cancerouse part was removed before it became invasive. I know that there is stll aggressive dysplasia cells that need to be removed. I am in a good place. I guess the assumption that if you are not a smoker or a drinker it must be the HPV virus which is sexually transmitted, is mortifying. I hope they can rule that out through pathology. I will keep you posted. I am a teacher with two little kids at home, so I am glad they found this at such an early stage. Stay well.

scooby
Hi everyone,

I feel like I just have so many questions while I await my appointment with the oncologist in two weeks. In the mean time I was hoping some of you on this forum or Dr. Joshi can answer a few more questions. So like I had mentioned in my first posting, I have been diagnosed with severe squamous dysplasia/carcinoma in situ with severely dysplastic tissue extending to the margins of the cancerous tissue removed. I know that I am very fortunate to have had this found early. The cancerous and precancerous tissue is under my tongue. I guess I am worried about how likely it is that this problem will return even if the surgeon is initially able to surgically remove the non-invasive cancerous tissue. I guess in my head I am thinking that I am a pretty easy case...surgically remove the infected area and closely keep it monitored, and I am good to go. Is it truly this simple or should I be concerned with the aggressive nature of the tissue that it could be more serious? Any insight would be greatly appreciated. I do realize that I really just have to wait and see what the oncologist says in two weeks. I am just trying to put my mind at ease. Thanks everyone who reads this and reaponds.
Hi Scooby

You're very lucky. When my little adventure started, I didn't know that this wonderful, helpful site existed.

Because my docs said that my tumor was encapsulated, I had this scenario all built up in my mind where I'd go to an oral surgeon's office, have the capsule (as I imagined it) removed, and go on my merry way, skipping tra la the rest of the day. As it was, I had a relatively easy time of it. To the best of my knowledge, the cancer has been gone since the day I had surgery five and a half years ago. Unless you're Sylvia Brown or the Amazing Kreskin, there's no way to know if your cancer will return. This is something you'll need to discuss with your oncologist.

You mentioned that your tissue in question is under your tongue. Does that mean it's on the floor of your mouth or on the underside of your tongue? Mine was on my tongue, but the left side of the floor of my mouth was removed for ease of access to my tongue. Heck, my doc had already opened it up for the modified neck dissection, so it just made sense to work that way. I've had excellent follow up and I'm well.

Don't go to this appointment alone. Not only will it be a rough day, but you might want to have someone with you for moral support and to remember any questions you might have forgotten.

You're not alone in this. Let us know how it goes.

Julia
Julia,
Thank you so much for your advice. It sounds as if you have been through quite an ordeal. I am seeing a lot of patients writing sbout a neck dissection...what exactly is that? It sounds painful. As for the location of the cancerous tissue found in me...it is on the underside of my tongue, not the floor. I am getting quite an education this week. Thanks for everything. I will keep you posted. One week and seven days to go before the appointment. I could use Sylvia Brown about now. Have a great night!
Wow!!! You are so thoughtful to have remembered and ask. I think it went well. I really liked the surgical oncologist. I am very fortunate because my situation was caught so early. As of right now, the plan is to go in for surgery on Oct. 5th. It is not invasive, so he does not have to cut in too deep. The circumference of the area of tissue that he is removing was larger than I anticipated, so I am not looking forward to that. A day or two in the hospital and some recovery time at home and that should be it for treatment. After that, I will just be checked every few months. I know I am very fortunate. It could have been so much worse so I can not really complain. It is just an inconvience is all. I ordered the book you suggested. I am just waiting for it to arrive. And for more own piece of mind, they could not link it to HPV. I know it shouldn't matter to me, but one doctor made me feel so aweful and was pretty certain since I do not smoke or drink, that must be the cause. Anyhow, thank you for all of your help and support. I can see you help many people in far worse situations than mine, and I really appreciate it! Have a great night, and I will keep you posted. OH yeah...you had mentioned pain in your ear, well, with my first minor surgery under the tongue, I had such severe ear pain. You were right, it stole the show! It was only referred pain, but the doctor said it will surely come back again. Not looking forward to that! Well, thanks again and have a great night.

Misty
Hello everybody and Julia,

Since I last posted, I underwent a partial glossectomy. It was not a very pleasant experience by any means but my oncologist is pleased with the pathology report. The surgery was for the right lateral side of my tongue where I was diagnosed with carcinom in situ at the end of August. The worst part of the path report shows a rare foci of very mild squamous dysplasia along two of the margins. I know this is good considering, but I still worry about it coming back again. How much of the tongue can you actually cut away? I am only 37 with two little kids. I do not smoke or drink, and I tested negative for HPV. So, we do not know why I developed it. I am just thankful that it was caught early. Thanks for everyone's support on this forum.
Best wishes to all of you!

scooby (Misty)
Hi Misty

Did the path report say whether you'll need either rt or chemo? We all worry about recurrence, but that's what follow up appointments are for. Did you get a rebuild?

How much of the tongue can you actually cut away? At the risk of sounding like a smart***, I'd say "as much as you need to." In my case, it's roughly half (left side to midpoint, tip to first molar). Dr Joshi would be best able to answer this from a technical standpoint.

I was 40, non-smoker, borderline teetotaler. According to my doctor, I "shouldn't have" developed tongue cancer. Unfortunately, I have a track record of doing what I shouldn't.

Julia
Hi Julia...ha ha ha..I too, laugh at my ability to develop conditions I should not have. Fortunately, the amount of tongue cut away will not leave me impaired in any way once it heals. He cut away two inches by one inch along the side and one inch deep. I do not need any further treatment. I will just visit the oncologist every three months for follow-up. So, I guess I am very fortunate but I definately do not want to do this again! Thanks for your help!!! Do you still worry about your condition returning?

Misty
I have just been diagnosed with carcinoma insitus on the right lateral underside of my tongue, I am due to have it laser removed on 21st Nov. and am a bit worried. I read your string of messages, which I found comforting, I under went breast cancer surgery, with Chemo and RT in 2004 and have been very well since them, so it was a bolt out of the blue to have this diagnosis. My oral surgeon says that it is not related just is unfortunate.
Hello, I just went for my four year oncologist check up and everything has been fine since the surgery. My surgery was in the OR with a hospital stay of three days. It was very painful at the time, but within 3-4 weeks I was fine. They never figured out what caused it, but I have had no further issues. The nerve damage , however, has left me with a constant feeling on the right side of my tongue as if someone stuffed it with cotton. It is hard to explain, but other than that, no issues. I am not sure how laser surgery works under these circumstances. I am guessing less invasive? Good luck! I am sure after all you have been through with breast surgery, this will be a piece of cake.
Lynkidd, I am 4 weeks post op for partial tongue glossectomy left side and left neck dissection. My cancer was stage 1. I am very lucky to have caught it early and lymph nodes came back clear so no radiation which is a huge relief. Breathing was fine afterwards, I had no issues there. Swallowing was painful for a while but this was mostly due to the anesthesia tube. Also had a lot of mucus in throat afterwards but drinking as much water as possible helped a lot. Happy to answer any of your questions (and you will have lots of them) and provide support where I can. It is a scary time, and you are going to be nervous but you will be fine, just keep taking deep breathes - you can do this.
Thank you so much for your reply. I do know they told me swallowing would be painful. I too have stage one and will have surgery I one week. Just want it over and go back to living my life. Hoping for the best. Will only be in hospital one night. Hope that's enough
Hi Lynkidd, I went to UCSF in San Francisco. They said they would keep me for two nights but I got out after one. I think it just depends on your personal circumstances. Can't fault the care I have received, it's been great. Will you have a neck dissection as well as your tongue? I was the same as you, just wanted to get it done and over with. I was reluctant about the pain killers but the best advice I got for the first week was to set your timer for the next dose and take them whether you feel you need it or not because if you let the pain build up it is very hard to get it back down again. Also, I lived on vanilla protein shakes - was the only thing I could manage and I felt at least I was getting some nutrition. Anything with the slightest texture made me feel like I would choke - of course everyone is different. Chicken broth was good too, you can get one that has additional protein. I lost 8lbs which was a bonus Wink My emotions were all over the place the first week also. If you are having a neck dissection, let me know if you want any information on that. I will be thinking of you. Take care xxx
Hi, I don't believe we are doing a heck dissection right now as all tests came back with no lymph node involvement. My surgeon is in Boston MA and comes highly recommended. He told me I would be on a liquid diet for a week or so. My biggest fear is swallowing pills..said I could crush them but what would I put them in to swallow. I gave always had such a fear of choking that this couldn't be in a worse place for me. I went to five doctors over the past six months for small lesion on tongue. Said it was lichen planus Sad it took so long for proper diagnosis. Glad I didn't give up as it could have been worse. My two cat scans of head/neck and chest were clear. No evidence of any cancer. Said first oral surgeon may have removed everything when lesion was removed but he has to be sure there are clear margins. How much of your tongue did they remove. Said I might have slight lisp in beginning.

Carolyn
Yikes, sorry you had to wait so long for a proper diagnosis but thank goodness it didn't get past stage 1 and hasn't spread to your lymph nodes. Glad you didn't give up - was the lesion sore? My CT scans were all clear but they wanted to do neck dissection just as a precaution - it's not been fun but at least I know I am in the clear (although I still worry). I'm not quite sure how much they removed of my tongue - maybe less than a third. The oral surgeon for the biopsy had removed a lot beforehand as he didn't think it was anything to worry about, just a callous caused by a sharp tooth. I'm amazed at how much my tongue has 'filled in' the last few weeks, it doesn't look that bad at all now. It still feels weird like a cross between having burnt it and bitten it but the numbness I had has improved and I can feel my teeth now. I saw the speech therapist afterwards and she gave me some exercises to do to strengthen the tongue and get the movement back - my tongue still feels quite swollen sometimes and this can affect my speech a bit - people say they don't notice but I notice. I had some nerve damage from the neck dissection of my face and shoulder which was quite noticeable in my mouth but that has improved. I'm hoping if it is just your tongue they are working on then you will have a really speedy recovery. I heard that they can give you a prescription for your pain killers to be in liquid form - I would ask about that if I were you, might make things a lot easier. Take a good lip balm or vaseline with you as my lips were really dry afterwards (although your hospital may provide that for you). I try not to get angry about it all but as a non smoker, not crazy drinker, 49 years old, healthy, work out, eat well, nice person LOL etc - it does grate! Oh and ice chips were a godsend for me afterwards Wink When are you scheduled for surgery?
Thank you for being so encouraging and open. My surgery is scheduled for June 22. He did not rule out any beck dissection but said he didn't feel it necessary to do right now. However don't feel like having multiple surgeries. I know he does two of these a week so must have a reason. Did you drink your protein shakes from a cup or straw? my tongue feels so good right now as all healed from the biopsy. I had the same thing as you..a small callous type sore that was rubbing on my back tooth. I feel like I'm living in a nightmare. My husband died from lung cancer 19 months ago and I was just getting back to living when this happened. I wish they could give a different type of anesthesia rather than that tube down your throats. Don't even know how the dr can work with that there. Said he will do frozen sections to check the tissue margins as he goes. Hate doing it but not ready to die yet.

Carolyn
It is a nightmare isn't it, I keep hoping I'll wake up. I like you, had no pain after the biopsy had healed, nothing visible and felt great! I think we just need to trust our surgeons - they know what they are doing but it is hard for us to stay positive. I drank my protein shakes from a cup as my oral surgeon who did the biopsy told me not to use a straw as it would put too much strain on the tongue??? I am really sorry to hear about your husband, I lost my brother late February in the UK and then came back to this diagnosis. I can relate somewhat. I have to admit feeling like I had been hit by a very large truck after surgery. I was recently reading about laser surgery for this kind of treatment but that wasn't offered/discussed. I am reading far too much at the moment - not sure if that is healthy or not! I had 'slices' of tongue taken and checked as they went until they cleared the margins and then I think they take a little more to be totally sure. We are not going anywhere soon - I know it is hard to stay positive, I have had a few very dark days and days where I just wanted to pull the covers over my head and stay in bed but you will get through this. Try to stay strong (I know it's not easy) but you can get through this - do it for you. I'm here for you, please never hesitate to contact me. Try to rest up and get some good protein into your body. I used arnica pellets afterwards to help with bruising and swelling, not sure if it helps but I felt proactive. You are in my thoughts, take care of yourself x
Janine.. I want to thank you for all your support And we do have to stay strong. Have you heard of Eva Grayzel? She is an inspirational speaker who was diagnosed about 17 years ago after going from doctor to doctor for 2 years with stage 4 tongue cancer. She was only 33. You might google her. I would try to stop reading so much. It doesn't help. Just be happy yours is behind you mine is still ahead. You have helped me greatly. I believe my surgery will be like yours. Meant to ask him about laser but of course forgot. I didn't think a straw would be good. I'm hoping to feel somewhat better after three weeks as I have tickets to a small venue musical. I will keep in touch and let you know how I do. Be well

Carolyn
Hi, I think you will make it to your musical. I made it to my preschool class graduation 2 weeks post surgery - I was exhausted afterwards but it was worth it to see their faces. I didn't do any speaking on stage like I would have normally but I got up on stage and presented certificates. I will look up Eva Grayzel, thank you. Another thing that I found that helped me afterwards because your mouth will feel horrible and breath will be nasty (well, mine was), I was advised to try 'Jason, simply coconut, soothing toothpaste with chamomile' because regular toothpaste nipped so much. Also my surgeon advised I try a tea tree based mouthwash - I used Desert Essence brand. I had my dentist smooth down all the sharp edges of my teeth also but that was just something I had in my head that I needed to do because my biopsy stitches had kept catching on one of my back teeth. Take care and I look forward to hearing of your speedy recovery xxx
Hi, hope you are doing well as haven't heard from you in a while. I had my surgery on Thursday and ended up having to stay two nights as they gave me Percocet for pain and it made me so sick and nauseous I could hardly get out of bed. I am now on just Tylenol but doing pretty well. I'm eating soup, smoothies, cream of wheat, sherbet, yogurt. Things like that. Frozen sections were negative and nothing suspicious seen on tongue. We are just waiting for the pathology report on the piece of tongue he removed where lesion was. I see the Dr again on July 5. Hoping for good news. I just can't do more surgery.
Great to hear from you. You have been in my thoughts but I didn't want to hassle you. Glad you are through your surgery and all is looking well so far. Sorry you felt awful on the percocet, I found 600mg advil worked great for me (oral surgeon prescribed after biopsy but second time around I had to wait 1 week pre surgery due to neck dissection). Sounds like you are able to get some nutrition and that is great, you need your strength. I will keep everything crossed that the pathology comes back clear for you and you need no more treatment.

I had my 6 week check up on Monday. Everything is healing as expected and my surgeon answered my huge list of questions and put my mind at rest (somewhat). I go back at the end of August for a follow up. My Mum is visiting from Scotland - she is 81 and waiting on a double hip transplant - so that has taken the attention from myself and made me focus on her, but have to say I am a little exhausted.

Tongue is still 'tight' but I am doing my exercises and eating pretty much normally.

Take care of yourself and I look forward to hearing how you get on at your July 5th appointment. Sending all best wishes.
Good morning and happy fourth o July. You must be feeling pretty well by now as I seem to be healing faster than I thought I would. Naturally I have a ways to go. Down to taking Tylenol three times a day. Eating still a bit of a challenge My go to dinner is soup. Have enjoyed soft boiled eggs for breakfast. But menue is so boring but losing weight. Going for doctor's appointment tomorrow and will get results of the final biopsy on the piece of tongue where lesion was. I'm hoping for good news since all the margins were clear. Talking is getting better but I didn't stay as quiet as I should have so I'm sure I'll get a reprimand. He should try having a piece of his tongue removed and see how easy it is. I'm just praying I can get back to good health. I have always had such good hygiene. How do these things happen? Stay well. Carolyn
Hi Carolyn, Great to hear from you. I am glad to hear that you are healing fast and managing to eat something. I started making homemade soup for a while - carrot was my favorite - as I was so fed up eating chicken broth. I did eat a lot of vanilla ice cream and jello - still doing that as I love it. I was thinking of you today and really hope that you got good news from your final biopsy. I am doing well thanks. I went back to the gym today - 8 weeks post surgery. The neck dissection has taken it's toil and I was surprised how weak my left side is but I will build it up slowly again. My tongue still has some numb areas and tight feeling but all in all, I am not complaining. I don't know why these things happen, a neighbor who is a doctor and works with cancer patients told me it is a virus that triggers the cells to go crazy and become cancerous but who really knows. Take care of yourself and let me know how you are. Best, Janine
Hello Carolyn and Janine

Good to know you are both managing well. Though it never gets back to as well as it was, the problems following treatment do improve with time. Some more than others. The key is learning how to make and accepting the adjustments in living you are forced to make, and keeping cheerful and grateful for the things we still have.

Hope all gets better and better.

Best wishes
Vinod
Hello, so happy to hear from you. Went for my two week checkup yesterday. Pathology came back clear. No signs of cancer. I was so happy. Tongue has good movement but has an on and off burning feeling like I have hot sauce in my mouth. Top of tongue looks normal. Just cut and healing underneath. Anything not too cold feels good. Tapered off on my pain meds but think maybe too soon. I too have some numbness on tongue that probably will never completely go away. Sad part is the only place I had cancer was the small lesion that was originally removed for biopsy. No where else. Have to go back in September for follow up ct scan as want to recheck lymph nodes. Said due to the smallest of cancers he didn't want to start removing lymph nodes. I really like him so do whatever he suggests. Stay well.
Carolyn
Thank you Dr Vinod for your input. It helps greatly being able to connect on this site, knowing that we are not dealing with these issues on our own. As you know, a huge array of emotions follows any cancer diagnosis - I am now at the grateful stage - I know how lucky I have been to have had such an amazing dentist and doctors helping me on this journey and such an early diagnosis. Best, Janine
Hi Carolyn, so happy to hear your news of no cancer signs - wooo hooo! A huge relief for you. I feel your sadness for only having the cancer in the biopsy lesion but how good that they got it removed with that and you have it no where else on your tongue - it just sucks that they have to do further investigations and surgery to make sure it has all gone but they got it and that's the best news. Having my lymph nodes removed was no fun but I trust my surgeon totally and I know he doesn't just do this for fun - in fact he meets with a board of surgeons to discuss each case before the surgery so I know it was not a light decision. I'm not one for praying but will keep you in my thoughts that you remain to be cancer free and everything goes well for you. I have to say how much better I feel over the last two days of just getting back to working out and being 'normal' again and looking forward (especially to my vacation in a few weeks time). Take care and keep in touch. Best, Janine xxx
Janine, did you read my posting. I had fantastic news yesterday from my doctor. No cancer found on the final biopsy. I will not be having any lymph node removal. Will be having a ct follow up in September. I am so thankful that someone finally listened to me and removed the tongue lesion that so many doctors said was nothing. I am eternally grateful. While tongue is still sore, I am feeling really good.
Dear Janine, your surgeon sounds very similar to mine. He too meets with a medical group to decide the best medical route to take. I know if he felt it was definitely necessary to remove lymph nodes he would have. Every test he took was negative. He's extremely thorough and just wants to repeat the ct scan in three months to be sure everything looks good before I go back to Florida. We are both lucky women..I'm wishing you continued good health. XxxCarolyn
Hi Carolyn, I have a feeling between having burnt my tongue on something hot and bitten it really badly - sorry if that doesn't make sense. I also still have some numbness. It's not a pain as such, just an annoyance. I'm trying to remember how I felt at 2 weeks and I think what you are experiencing is pretty normal - hopefully it will start to feel better over the next few weeks. Is your tongue very swollen? Janine x
Good morning
Thanks so much for your reply. My tongue doesn't really feel swollen. Maybe slightly underneath as that's where it was cut. Top o tongue looks normal. Tip of tongue is a little numb and almost feels like a small canker sore. When I touch the top left side of tongue with finger nail I can't really feel it. Mostly numb and who knows if that will ever change. All has to do with nerves and maybe they regenerate. Hope your Mum is doing well and as always the best to you. Xxx Carolyn

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