Hi everyone. I'm going to ask my first question. My doctor said that he believes that they were able to get all of the cancerous area out during the biopsy. The immediate surrounding area was only positive for dysplasia and at a depth of .2 cm it was clear. The CT scan came back clear. I have an appointment with another doctor tomorrow and a third on Friday (this is what happens when you have friends and family in the medical field who all do research on your behalf) so I know I will find out more information in the coming days but do I need to get nodes removed if the CT came back clear? I have read many posts suggesting that biopsies are the only way to know for sure but since my margins are mostly clear, am I looking at that too? They want to do a freeze (I think that's what they called it) test to make sure that none of the surrounding tissue around my initial biopsy is positive for dysplasia or cancer. Does anyone have any insight to offer about this while I wait to hear what the doctors have to say?

Katherine,

Welcome to OCF! Very sorry to hear your diagnosis, but the good news is it was found early.

I'm glad you are going for additional opinions. Make a list of questions to ask, and bring someone with you to take notes. The OCF main web pages contain a wealth of information on oral cancer. I found it to be the best source of information on oral cancer.

Dysplasia is a pre-cancerous condition - it could turn into cancer, but it could remain as dysplasia. Clear margins are very important - I don't recall how wide the margin should be, but this is a question you can ask.

Perhaps they are referring to a frozen sections? For more information on this and other biopsy terms, check out:
http://oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php

Some doctors recommend having nodes removed even if stage 1. I've been to 4 different ENTs over the years, and had very different recommendations. Mine is a complicated history involving a recurrence and other issues, but I never had any lymph nodes removed and I'm still here!

Wishing you the best!

Hi there... and welcome.

The nodes are a stop gap. Most of the time the cancer makes its way into the nodes and then onto other locations. I had no cancer in my nodes on 3 separate scans, yet there was one node that I could definitely feel and it was full of cancer. They discovered this upon removal of the node during my surgery.

A clear CT is reassuring but bear in mind, microscopic cancer doesn't show on a scan, and this cancer sometimes seeds to the nodes even in the early stages. (I think this is very much dependent on the aggressiveness of the cancer to begin with) tumor size can be taken into consideration, but I have also met people with superficial stage one cancers that did have invasion into the nodes. This cancer doesn't follow any text book rationale, which is why I always push people to do what they can with regards to treatment - up front.

Mostly clear margins is NOT COMFORTING. You want completely clear. I would rather have more removed than not enough. And as Susan said, dysplasia is a crap shoot. Though I would say if you have already had a cancerous area removed, the dysplasia has a higher chance of changing - into SCC particularly if it is adjacent to the cancer.

so sorry you have to be here but it's a great group.

How large was your tumor? where are you being treated?

take care.

Thank you Susan and Cheryl for the replies. That gives me at least a little more insight into the situation. I met with the other doctor today and he said that since it's superficial they want to do another excision to make sure that all the margins are clear and they do not feel it is necessary as of now to do a neck dissection.

Cheryl, my tumor was about 2 cm but they took out more to make sure to get surrounding tissue. I am in Colorado and have seen doctors at a few places and on Friday I have an appointment with a doctor at the University of Colorado hospital. I saw that it was listed on the top hospitals list.

Your situation sounds similar to my husband's, though slightly more advanced (see my signature below). Once cancer was definitively diagnosed via an excisional biopsy (which also provided clear margins), he switched his care to the Johns Hopkins cancer center, one of the country's top centers, about a hour or so from our home. The local ENT who did the excisional biopsy (since cancer hadn't been diagnosed at that point, my husband didn't seek out a cancer specialist) was talking neck dissection, radiation, etc., and the Hopkins ENT -- who sees this all day, every day -- was able to reassure my husband that in his case, all that wasn't necessary. If he had said that further treatment was needed, I would have trusted that a lot more than a statement from a doc who spends most of his time taking out tonsils and putting tubes in kids' ears.

You're smart to get another opinion from CU. It's a member of the National Comprehensive Cancer Network, an alliance of leading U.S. cancer centers that together develop the annual updates of the treatment protocols for various types of cancer.

And congratulations on catching this at an early stage!

Welcome!

Looks like you getting plenty of good advise already. Nothing more to add other than say hang around and you'll learn a lot.

Thanks Don. I am hoping to educate myself as much as possible about this since it is something I knew absolutely nothing about until this week...

Boy, I sure wish I had found this site years ago when my husband was 1st diagnosed. You learn as you go but with csncer-there are so many differentials that you sometimes have to go by your gut feeling I guess. I don't like my "gut" much these last few months but must remain positive and strong for him. The most challenging thing I have ever done in my life.