My husband age 59 was just dx with a sequomous cell lesion on the floor of the mouth. He found lesion himself it was first thought to be a salavary duct stone by the first Dr. ALso he is not a smoker or drinker not smoked for over 20 years and has not had a drink in almost 30, I would say he was a moderatley heavy smoker and drinker at those times. He has had the head and neck scan and we have an appointment with the Dr on Tuesday. The lesion removed was was small .4cmx.4cm by.2cm but all margins are involved so I know this means he will need more surgery. I am hopeing someone may give me advice on what will happen next, especially if the nodes are clean, I understand if the nodes are positive he will need radiation and a neck dissection at the very least

It's too soon in the diagnostic process to speculate on the outcome. He needs a lot testing before they can get a clear picture:

PET or PET/CT
MRI
CT
Chest xray
baseline hearing test
TSH baseline
Kidney (creatinine) clearance
and all kinds of other lab and bloodwork

Has all of this been done?

Was that .4cm that would be 4mm x 4mm x 2mm? 2mm is as small as can be detected by current scanning modalities. What did you mean by "all margins are involved"? They either get "clear margins" or not typically.

What staging? How invasive? What is the differentiation? These are questions to ask.

Many of us only had chemo and radiation and no surgery.

I would hazard a guess that if the lesion was that small there may be no node involvement. They can feel (palpate) a node above 1cm.

By floor of mouth do you mean under the tongue?

Sorry to ask so many questions I am just trying to get a clearer picture so we can appropriately respond to you.

Is he being seen at a Cancer Center or Comprehensive Cancer Center? If not, I would strongly urge you to get a second opinion from one, if nothing else. It is critical that this be done PRIOR to starting treatment.

I checked there are none in Rhode Island but here is a link to the list:

http://www3.cancer.gov/cancercenters/centerslist.html#L25

Hello Jag,

Welcome to the oral Cancer Foundation. You won't find a more informative site on oral cancer on the web.
There are alot of unanswered questions as Gary points out. Please post more info so we can help you. Be sure to write the questions down ahead of time, we never remember all of them at the appointments. If possible take along a thrid party, It's alot of information to digest when the doctor is talking.
Hoping they caught this at it's earliest stage and his treatment goes well.

All My Best, Danny Boy

jag, Boston isn't that far from you. Whatever opinion you get about whether he'll need anything beyond surgery, you'd be well-served by getting a second opinion on it from Dana Farber (where I went for my second opinion and they were extremely helpful)!

Nelie

We go to surgeon tomorrow so far he has had a head and neck CT ( no results yet) and the blood work for kidney function studies. Our plan as of now is to listen to what the Dr has to say, he is considered the best Cancer Dr. in RI and this has been expressed by many medical people in our 10 day wait time for an appointment. However, I am not going to take a 1 man answer if the dx is positive for nodes and will go to Boston. Gary, the lesion was on the floor of the mouth to the left of the tongue base and appeared to be a slaavery gland stone I think it was lateral of the tongue and the path report states floor of mouth I am not sure how lateral it must be to not be considered the tongue or how far the microscopic tissue is involved

Nellie how long to get an appointment At Dana Faber once you called I have a feeling the surgury will be booked soon again hear say

Jag,

Sounds like the way my tongue cancer presented. It was under the tongue and the oral surgeon that did the initial surgery wasn't comfortable going deep into the floor of my mouth in his office, so the margins weren't clear. He sent me to an ENT and I had the scans and bloodwork etc, he also had another pathologist look at the slides from the original biopsy. I had clean up surgery at the tumor site, an alloderm graft placed, and 33 lymph nodes removed, all were clear. That was 3 years ago and I had no further treatment other than going to the doctor every month for the first year, 2nd year, two months and now three months. At the annual anniversary I get a CT w/contrast, chest xray and blood work.

I am one of the lucky ones that have not had extensive treatment, and I am diligent in my follow up care.

Good luck today to your husband!

Sincerely,
Lisa

jag,

As Gary pointed out, there are many factors involved in getting as complete a picture as possible of the nature of your husband's tumor and the surrounding area. Even if the pathology report says all nodes are clear, I would still urge you to get to a major cancer center for a second opinion. In my case, the pathology report showed clean margins all around after a partial glossectomy and neck dissection, but there were some signs that the tumor was becoming aggressive and my cancer team pushed strongly for radiation as well. Many people here can tell you it's best to hit this disease hard at the first opportunity.

Please keep us posted on how your husband is doing, and feel free to ask questions as you go along -- there are plenty of people here who have been through something very similar and can give you great support.

Cathy

I guess I am somewhat confused as to what is floor of mouth and what is tongue You all seem to indicate tongue is it one in the same?
Thanks for your help
jag

I THINK the floor of the mouth in under the tongue between the base of the inside of the tongue and the front teeth. There is a very large salivary gland there in the the middle.

Thanks for all the answers to questions I will know more tomorrow. However, let me say the Dr we are seeing is considered one of best aggresive cancer surgeon in country. He works out of a cancer research center but we are only an hour from Boston so I will not hesitate to go there if I feel the need