Hello,
I'm new to this board. For many years, I have suffered from oral lichen planus, an inflammation of the soft tissues of the oral cavity, that in a small percentage of cases can lead to amlignancies. Unfortuantely, I am one of that small percentage.
A month ago, I was diagnosed with SCC, a T1 tumor located between the two molars on my lower right and my cheek.
I had an x-ray and CT scan shortly thereafter and both came back clean. Two weeks ago, I had the tumor removed (plus my two molars and the outer cortex of my jaw adjacent to the tumor).
My surgeon is out of town this week but before he left, he called the pathologist to determine that the margins were clean and the jawbone unaffected. I will be meeting with him next week to map out a course of treatment.
After reading some of the posts on this board about re-occurences, the illusion of clean margins, occult mets, etc., I'm wondering how important it is to get a second opinion, regardless of what my surgeon recommends. I live in rural Vermont and the health care in nearby Burlington has been very good, but I'm wondering about the pro's and con's of travelling somewhere like New York or Boston for a second opinion. I would greatly appreciate any advice. Thanks, Sheldon

Hi Sheldon,

Most if not all of the long term members at the OCF recommend a multiple diseplindary cancer center where your case is presented to a cancer review board. You end up with a review of your case and the best treatment plan for you is decided. It won't just be your surgeon who makes the decision, There will be a radiation On'gist and others.

You didn't mention if you are scheduled for raadiation? In most cases radiation is a must following surgery. I am just repeating what I have learned from this board. Hopefully Brian or Gary will answer your question in more detail.

Good Luck on your treatment and please let us know what happens.

Please excuse my spelling, Haven't learned how to copy this to Word, spellcheck and return?

Dan Bogan

I absolutely agree with Dan. I was diagnosed in Austin, TX, which is a pretty fair sized city with good facilities and medical care. However, I ultimately decided to commute to Houston to be treated at M. D. Anderson for the reasons Dan outlined. My guys in Austin didn't take it personally and I'm very happy with my decision. No matter what happens, I took the best shot I could at this. You deserve the best care you can find. You don't want to find yourself in the future saying things like "I shoulda went to so and so."

-Brett

I have the highest respect for head and neck surgeons; they exhibit skills that I could only aspire to. But after three years of running the foundation, and interfacing with cancer experts around the US at the best institutions, I have this bit of anecdotal information to pass on to you. It seems that those who have the longest survival rates, have multidisciplinary treatments, such as surgery and radiation. Some surgeons say, "We can always keep radiation in reserve in case it comes back". As a non-doctor, I respectfully disagree with this perspective and you'll see it in the tone of my many posts here. When you have an oral cancer recurrence, it is frequently much tougher to eradicate than the original primary disease. It is frequently in soft tissues, lymph systems connected to the rest of the vital organs in your body, ( a place you really don

I agree that a second opinion is a good idea. My mom just had a recurrance in November original cancer in April 03 and like Brian said her ENT said "Radiation is one time shot" so basically he just removed the tumor which was stage 1 did the radical neck dissection no nodes positive and sent her on her way. Now with the recurrance she had to endure another surgery where she lost some teeth and had a skin graph from her leg and now her mouth is completely different and she had to recover from all this and is now in her 5th week of IMRT. Its so frustrating although she is enduring the radiation as good as we could hope and the only downfall so far is all the sores in her mouth are causing it to be difficult to eat and swallow she is doing really well.
I definately think a second opionion is a good idea. If we could turn back time we would have opted for the radiation back in April rather than saving it for her to go through so much more now.


Danielle

Sheldon, Your question is a very good one, with unfortunately no exact answer. If your cancer was removed very early, and was very small, and they removed to a clear margin, then you might be cured right now. The problem is there isn't any way to know for sure. One way to attempt to know is to have a "radical neck dissection" whereby the lymph nodes on the side (where the cancer occurred) are removed and examined microscopically. If that test also finds no cancer, then you are another step in the right direction. Of course even with that there is a possibility of a return of the cancer. People in the business of treating these things rely on statistics to guide them in their choices. Statistically speaking, you are already on pretty high ground. (because it was early and small etc) HOWEVER there is no way to know if your personal case falls within the statistics.

What all this means is that you may have to make a decision that leans toward extra caution, or you might take a chance. A second opinion will help you make those decisions. A couple of thoughts for you: First, get the second (and even third) opinion from the best people you can afford. I wouldn't stop at travelling the entire U.S. to get there. Second, be sure you consult with a Radiation Oncologist. ENT surgeons are great but as was said they may tend to see things from a sharp edge perspective. Third if you decide that the surgical-only option is good enough, then arrange for VERY frequent check ups (every 2 to 3 months) for the next 5 years or more.

In the words of my ENT:

"this is not a cancer you want coming back"

What we mean is it can be a tenacious killer, fairly easy to stop if caught early. Once it gets loose in your body, there are few chances to win. Further, the later treatment options involve permanent severe changes in the way you look, and if it becomes a terminal case, well......just do the best you can to stomp it out.

I hope this helps and take care.

Sheldon,

It's your life we're talking about. Get another opinion, and go for the best treatment facility you can get to. My husband's original cancer was also T1 in the retromolar area. He had surgery and radiation with local docs with good reps, yet only a few months later he had major recurrence. We are fighting with everything we have to stay ahead of it, but it seems to be gaining on us steadily. We wish we'd opted for the 4 hour drive to the nearest large research hospital with that first diagnosis instead of settling for the docs close to home. Now we are seeing the "big dogs" but we feel like we wasted too much time getting to them.

If I'm sounding melodramatic, well...I wish someone had scared the pants off us just over a year ago.

Christine

I wanted to thank you all for replying so thoughtfully and quickly to my post. Following your posts, I am going to try and get a second opinion from a big city cancer institute, most likely Dana Farber in Boston.
I am very moved by the compassion and generousity of you all and the collective determination to fight this horrible disease as long and as hard as possible. Bless you all, Sheldon

Sheldon,

Good for you! In the long run, I think you'll be glad that you explored all your options. I know it sounds like a lot of trouble getting medical records and going to another facility, etc., but as Brian (I think) said one day, this kind of cancer can "take you down like a linebacker before you know it." You are already helping yourself by doing research just from reading these helpful posts. Know your options and write down questions before you go--then when you are actually with the doctor, be sure to ask everything you wrote down! Don't let anyone pooh-pooh your concerns, OK?

I hope everything works out for you!

Take care,
Christine

I wanted to update this thread and thank you all for your advice, it very well may have saved me from being misdiagnosed and mistreated.
The first opinion (obtained locally in Burlington, Vermont) I received was that the margins were clean, no mandibular involvement and the recommended treatement was simply to monitor me on a monthly basis. The second opinion from the Massachusetts Eye and Ear Infirmary in Boston was that one margin was not clean and that I definitely need radiation.
I now have two appointments with radiation oncologists, one in Burlington and one in Boston. The point I would like to make is how truly appreciative I am for all your advice and secondly, that in all cases, I would recommend a second opinion from a big city, multi-disciplinary cancer ceter. Despite the hassle of getting a second opinion, particularly if you live in a remote, rural area, it is essential and well worth the effort.