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

This message has been edited. Last edited by: scooby,

Hello,

I am actually replying to myself. I can not seem to set this up so that I can receive replies. Any help is appreciated. My initial post is quite lengthy.

Scooby

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

Thank you so much Dr. You have helped put my mind at ease.

Scooby

Hello Scooby,

I developed squamous cell cancer of the tongue from a lichen planus condition which had existed for 3 years previously (and was extremely painful). I had absolutely no other risk factors and was told that it sometimes happens. I had surgery: partial glossectomy and modified neck dissection. Luckily, I didn't need radiation and I have been cancer free for 6 years now. I was 57 when I was diagnosed.

If your cancer has been caught at an early stage, you have good chances of leading an almost normal life afterwards. I wish you well with your treatment, whatever you doctors decide.

Please let me know how you get on.

Patricia

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!

Hi Scooby

A neck dissection is pretty much what it sounds like. According to their book Cancers of the Mouth and Throat by William Lydiatt and Perry Johnson, it's a surgical procedure to remove lymph nodes from the neck. Mine was a modified radical, meaning they took lymphnodes (50 of them, all of them "clear"), surrounding fat, and the submandibular salivary gland. The scar runs from about the midpoint on my throat to just below where my jawbone bends. You're right, it's probably quite painful, but I was sound asleep when it happened. Honestly, I was in a lot more pain before surgery (referred pain in my left ear; I wouldn't wish it on ANYONE!) but when I woke up afterward there was no pain. The worst part for me was a toss up between not being able to eat (ng tube) and having a cold while I was trached.

You might have to order it online, but I really recommend the book I quoted earlier (Cancers of the Mouth and Throat). I actually found it in the very very small library where I work. It's as close to an Oral Cancer for Dummies book as you're likely to find. I reviewed it a while ago, but just read the whole thing over the weekend. I'm taking it with me tomorrow to show it to my doctor.

Julia

Free textbooks:

• Cancer Management 7th Edition (2003)
  
• Cancer Medicine

quote:

Originally posted by Julia:
Hi Scooby

A neck dissection is pretty much what it sounds like. According to their book Cancers of the Mouth and Throat by William Lydiatt and Perry Johnson, it's a surgical procedure to remove lymph nodes from the neck. Mine was a modified radical, meaning they took lymphnodes (50 of them, all of them "clear"), surrounding fat, and the submandibular salivary gland. The scar runs from about the midpoint on my throat to just below where my jawbone bends. You're right, it's probably quite painful, but I was sound asleep when it happened. Honestly, I was in a lot more pain before surgery (referred pain in my left ear; I wouldn't wish it on ANYONE!) but when I woke up afterward there was no pain. The worst part for me was a toss up between not being able to eat (ng tube) and having a cold while I was trached.

You might have to order it online, but I really recommend the book I quoted earlier (Cancers of the Mouth and Throat). I actually found it in the very very small library where I work. It's as close to an Oral Cancer for Dummies book as you're likely to find. I reviewed it a while ago, but just read the whole thing over the weekend. I'm taking it with me tomorrow to show it to my doctor.

Julia

Hi Julia,

Wow, it sounds like you are a very strong person with a great attitude. You really have been through a lot. I hope I handle whatever happens to me as good as you. I still can't help but think it is nothing since it was non-vasive cancerous tissue. I do worry because I know there is still aggressive dysplatic cells that they did not remove yet. I just wish this problem was on any other part of the body. I teach so I talk all day long and then come home and take care of my own little kids. Really...the surgeon could have my big toe, just leave the tongue alone. OK, I have one more question for you...Why did they remove so many lymphnodes if they were clear? I definately will look into the book you suggested.

Thank goodness for a busy job that completely distracts me till I leave.

Thanks for all of your help!

Best wishes,

scooby (Misty is my real name)

Hi Misty

You don't know what you can do until you find out what you have to do. That is the main lesson I've learned from this whole wild ride.

Well, the day before surgery I had radioactive injections (three in my tongue, one in the floor of my mouth--hurt like a son of a mother) and I think that my doc removed anything that glowed on the scan. Judging from his response when he read the pathology report, he didn't know that they were cancer free.

I didn't talk for a month or so post op. I wasn't told not to, but it really didn't seem like a good idea considering I had a boat load of sutures and an incision that looked like the number 7. You might want to discuss this with your docs. My speech is the same as it ever was, and I didn't have speech therapy.

I've got my fingers crossed for you.

Julia

Hi Misty

Just wondering how your appointment went.

Julia

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