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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
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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.
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

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