Hi, I am new here. I have two small <5mm areas of leukoplakia on my tongue that I am having biopsied in about a week. They are on the left lateral/ventral side of my tongue. I am having it done by an oral surgeon and they will be doing an excisional biopsy so they can hopefully get clear margins, whatever the result. I am 32, have NEVER smoked, and drink only occasionally. Still, if it IS cancer, I am confused on a few things. If they get clear margins, will I need further surgery or radiation? Do I need to have a PET scan or a neck dissection to see if the lymph nodes are affected? If they don't get clear margins, how do they decide how much of the tongue they should take?
I know everyone's situation is unique but I was hoping someone could shed some light on the topic. I am also wondering how long I could expect to be out of work? I am of course panicky and fearful all the time and I don't know how to deal with it. Any tips?

Welcome to OCF. You will find lots of help and support here.

The one word I saw that stuck our while reading your post was IF.

I know its a scary time, but you need to relax and wait first for the test then about another week for the results. Please try to make the most of everyday and not to worry. Easier said than done, I know. Ive been there and its not easy.

Best of luck with the results.

Thanks for the response- I know I don't have a diagnosis yet so this is all a bit premature. I guess I am trying to be "prepared" haha....in case of the worst. I am now getting worried because the oral surgeon recommended the excisional biopsy rather than just do a brush biopsy or other incisional types. Does that mean he is already suspicious of cancer? I am so confused.

Chloe --

My husband was in a similar position almost three years ago. His dentist referred him to an oral surgeon because of a sudden (since his previous dental visit a few months before) appearance of a small patch of leukoplakia on his tongue, in a similar location to yours.

The results of that initial biopsy showed moderate dysplasia, not cancer, but warned of a possible "skip effect," meaning that there could be cancer in a section that was not biopsied. The lab that read the slides does only oral pathology, so it may be that the pathologist saw something that raised his suspicions, but he could not definitively say it was cancer because cancer cells were not on the biopsy specimen.

The oral surgeon referred my husband to a local ENT for an excisional biopsy, which took place a month later. (I don't know why the oral surgeon didn't do one initially -- perhaps because of the location of the leukoplakia or because it was thought that cancer was unlikely.) That pathology report came back showing SCC in situ, with a tiny bit superficially invasive. Margins were close but clear. Once cancer was diagnosed, he had his slides, biopsy reports and surgery notes sent to Johns Hopkins -- a comprehensive cancer center about an hour away -- and was examined by an ENT cancer specialist there.

No further treatment (radiation or chemo or additional surgery) was required or even recommended, and the only day he was out of work was the day of the excisional biopsy, because of the anesthesia. He now gets examined with a VELscope at the dentist every six months and also is checked regularly by the local ENT (who is a former chief resident at Mayo) and the Hopkins cancer specialist. He has had two PET scans that showed nothing untoward. So far, so good, knock on wood.

Keep asking questions as you think of them. The people here are the best.

Well, I am just worried about additional testing if there is cancer or that they would recommend a neck dissection. Seems like there are lots of others where that was standard protocol. I am just trying to find out if they find cancer but they have clear margins what I will need to do next. I am less than an hour from the Cleveland Clinic. From what I've been reading even a report of dysplasia is enough to get a second opinion from a cancer specialist? Is the PET scan enough to detect cancer in the lymph nodes?

Chloe:

My cancer was detected by a biopsy. That is the only way to tell. Both times Ive had a biopsy it was the type where the oral surgeon cut a piece of tissue and sent it to the lab. The stage of my cancer was measured by the PET scan. This also told my doctors that my cancer had not spread to any lymph nodes. One thing to understand about PET scans is that they do give alot of false positive results. To prepare for a PET scan drink at least 48 oz water the day before and avoid sugar, carbs, and exercise.

Its ok to be pro active. Its good to be prepared. Having cancer is a long process to become cancer free. Please dont let it steal your time from you. Right now is the best time to cherish what is most important to you and enjoy your life. The time spent waiting for results will go by much faster and easier if you do enjoyable things and stay busy.

Im sorry Im not familiar with dysplasia. Best thing for you to do is get checked with a biopsy. Then you will know.

Please keep this in mind: It's not cancer until the pathology report says it is. Any further treatment will depend on how it is staged -- and even then, there are variations, as you'll see as you continue to read here.

One OCF member, davidcpa, got five opinions after he was diagnosed. All but the last, from a comprehensive cancer center, recommended surgery. He ended up being treated at the CCC with radiation and chemo only.

The latest treatment protocols for head/neck cancers are available here, but you may be getting ahead of yourself by reading them now.

When I first asked about leukoplakia and dysplasia on these boards in May 2006, here's how OCF founder Brian Hill responded:
[quote]This is not a rush situation. 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]

Cloe, this whole process is taken one step at a time. Don't get ahead of the process by imagining the worst. It would be unusual for a neck dissection to be part of your treatment at this time. Please take a deep breath and relax some. Yes get another opinion about treatment options, yes be diligent in following up, but you should not let yourself get freaked out.

I know that is not always easy but you can do it.

I personally like to know what the next step will be if the worst happens, in part so I can mentally try it on for size and get used to the possibility, but I do NOT confuse this 'what if' planning with the reality.

It's one thing to consider the worst, but quite another indeed to extend that consideration to a certainty that it IS the worst, because it isn't!

That, of course, is why the wait for the biopsy results can be excruciating...

All of the ifs are like saying my car might get a flat tire, that can't happen until something cuts your tire or the valve stem breaks off. Quit worrying about it until you hear something from the Dr to worry about. What if the sky should fall?