Hello! I am really new to this and have to educate myself. In May, I went for a regular dental visit and the dentist noticed some Leukoplakia on the left ventral surface of my tongue. The doctor referred me to an oral surgeon who did a biopsy on June
13th. The tissue sample showed dysplastic cells with "variable hyperkeratotic and dysplastic stratified squamous epithelium
overlying inflamed fibrous connective tissue and skeletal muscle". I had another oral surgery for that on July 20th to remove the remaining dysplastic tissue. Just got that pathology report. Due to the "multifocal nature of the dysplastic changes with increased mitotic activity within the basal region", I
have to see another doctor in 2 weeks.

Does anyone have input on this diagnosis and questions to ask doctors. The oral surgeon is really light on bedside manner and has no time to answer any questions. I have googled all these terms and have some idea of the situation.

I know this is not at all as serious as most of your situations. However, I would really benefit from your input.

Hi Tina,
and welcome to the forum. I am sorry that I cannot answer your question but others here have had leukoplakia issues and I am sure that they will respond to you soon.

My husband was in a similar situation -- an oral surgeon's initial biopsy of a small leukoplakia (also discovered by his dentist) showed moderate dysplasia, but a more thorough excisional biopsy by an ENT showed cancer in situ and a bit superficially invasive. A followup PET scan showed no areas of concern.

When my husband got the second biopsy results he was immediately seen by an ENT at a comprehensive cancer center. That center's pathology department reviewed and confirmed the second biopsy slides; the ENT at the CCC had all the first ENT's notes and the PET scan report. The CCC doctor said that all looked good and will be checking him regularly (monthly for the first year, every two months for the second, etc.) from here on in.

You've come to the right place -- when I discovered this site, I did a search on "leukoplakia" both on the message boards and on the main OCF site and got a lot of good information. If you've been researching this, you'll know already that in many cases, leukoplakias don't become cancerous. But they can.

You may be lucky and never have this recur again. (And you are definitely lucky in having such a proactive dentist, as others here will tell you.) But it's worth getting checked out by a specialist -- I'd recommend finding an ENT who sees a lot of oral cancer patients. Before your appointment, ask if the doctor would like the biopsy slides re-read by the lab he or she normally uses. Also see if the doctor would like the oral surgeon's notes and the reports on both biopsies sent ahead of your appointment, or whether you should bring those with you.

Here's how OCF founder Brian Hill responded when I first asked about leukoplakia (emphasis is mine):

[quote]Leukoplakia is a PRE-cancerous condition that does not always move completely into malignancy. Dysplasia are those cells which are no longer normal, but they are not really malignant yet...an in-between state, so to speak. Dysplasias also do not always go completely over to the dark side, but they are a step in that direction... and having them removed, or watched very regularly is prudent. Dysplastic leukoplakias can often return after surgical removal, many times done with a laser, sometimes via a blade excision. Keep an eye on things even after the removal from now until forever.[/quote]I hope all goes well for you.

-- Leslie

Tina,

Don't under estimate your situation. Your situation is just as serious as any one else here. Glad you found this site. WELCOME

You are to see another Dr. what Kind?
I hope that Dr.. will answer your questions. Just tell him you need more information. My guess is that you are about to see a radiologist.

My story started with tongue. I had surgery on tongue to remove cancer with clear margins. A year later cancer back in neck stage IV. I had sore on tongue for about a year before I had it tested. I waited to long.

Glad that you are getting things checked out before to much time passes. You will find lots of information and help here. Don't worry you are not alone.

Take care
Diane

Tina
Welcome to the forum. I sincerely hope you do not need us.. but ..if you do we will be here for you.
Take care
Marica

Thanks to each of you for your prompt and informative responses. The Oral Surgeon was very dismissive. He seemed reluctant to give me copies of the pathology report and finally did. I am scheduled to see a Dentist in 2 weeks. Based on previous posts and your guidance, I have asked my family doctor and my dentist for a referral to a ENT specialist with oral cancer experience. Compiling my list of questions based on the extensive information available on this site as well as on google. I'll keep you updated.

Given that both the University of Chicago and Northwestern have major cancer centers in Chicago, I'm sure you'll find an experienced ENT.

Do keep in touch.

-- Leslie

Finally - I have an appointment with an ENT Dr - Harold Pelzer at NorthWestern's CCC on Sept 21st!! He has received a copy of my pathology reports which were from the Northwestern lab. My Family Dr has be a great support and is trying to get me an earlier apt as she knows him from med school.

Many thanks for the specific instructions from Leslie which I followed to the word - ENT, CCC, send report in advance, etc. I'll keep you posted and hope each of you is doing well.

In a previous post, I cited your luck in having such a proactive dentist -- you're lucky, too, that the biopsy results were done by a lab your doctor is no doubt extremely familiar with. (There are stories on thse boards of people whose biopsy slides appeared OK until they got a second or third reading by a lab at a CCC, where the pathologists who see this stuff every day picked up something suspicious.) And you're lucky that your family doctor is so supportive and helpful.

Here's hoping that luck continues!

-- Leslie

Hi Everyone,

My mother is 60 yrs old and was diagnosed with squamous cell carcinoma on her tongue about 20 days ago. She had partial glossectomy with neck dissection done. Fortunately the tumor was 1cm and had not spread to her lymph nodes.My question is---does she need any further treatment? Her surgeon says she does not but she is in India and I wanted a 2nd opinion here.Can anyone recommend a good ENT surgeon in the Northern Virginia/DC area?

Sandhya --
I'd strongly recommend an ENT at a comprehensive cancer center, rather than a general ENT, since she has already gotten a cancer diagnosis.

We live in the DC area as well -- my husband's excisional biopsy of a leukoplakia was done by a general ENT in northern Virginia. But when the biopsy results showed cancer, he was seen by an ENT at Johns Hopkins CCC, about an hour away in Baltimore. In the latest US News rankings, Hopkins is #1 for ENT and #3 for cancer. If your mother is not coming to the US, there is a Hopkins web site about providing second opinions for patients who are overseas.

Georgetown, in DC, also has a CCC with head and neck cancer specialists.

Also, search the boards for messages by Praveen_Peddi (member #2830), whose brother is being treated in India. It sounds from the posts as if he is getting as aggressive and up-to-date treatment there as he would have gotten in the US. You could send Praveen an e-mail or private message to find out where he is being treated and perhaps seek another opinion there as well.

-- Leslie

My family doctor pulled a favor and I got an earlier appointment with Dr. Harold Pelzer at Northwestern's CCC on Sept 7th. He did a through physical exam, a detailed review of my pathology report and answered every question I asked - Finally a doctor who isn't in a hurry!!

Here's the summary:
1. Moderate Dysplasia with or without a clear margin on the excisional biopsy is not to be ignored.
2. There are no clinical trials or prevention that he would recommend (previous Acutane and Celebrex studies are no longer considered valid). Aphthous Ulcers are viral and are not linked to this diagnosis.
3. He has sugessted the following suvellience plan with CCC appointments at the following intervals:
3 a) Every 2 months for the first 6 months.
3 b) Every 3 months for the rest of the 1st year.
3 c) Every 4 months for the 2nd year.
3 d) Every 6 months for the 3rd year.
(During this part of the appointment it almost seemed like Brian Hill was being quoted: "Keep an eye on things even after the removal from now until forever."!!:-))

The biopsy site has healed and I am feeling good! Thanks for all your info and support.

Tina --

Sounds like you are on the right track, and good for you for pushing for an answer.

On the main part of the OCF site there is a Dental Lifesavers page -- the foundation has a program to honor dentists who do thorough oral cancer screenings and pick up on conditions at their earliest stages. As we all know, early detection is key. Sounds like your dentist would be a candidate.

I hope all continues well for you!

All the best --

Leslie