Hello all,
I started with a small leukoplakia that became an ulceration.

March 30th the oral surgeon did a biopsy and removed a tumor that was 1.2 x.9 x.4cm on the RT lateral side of my tongue. The biopsy came back positive for SCC on April 3rd. Cancer extended to the margins and cells were poorly differentiated. He refered me to a radiation oncologist.

The radiation oncologist consulted with an ENT experienced in head and neck cancers. Ordered a PET.
PET came back clean.

On April 20th I had a partial glossectomy. The ENT found no more evidence of cancer. Specimens are being sent for further review. I will find out more on Friday, April 24th.

Harley,

Quite disturbing to me is the fact that your radiation oncologist had to consult with an ENT re your Tx. My comfort level just hit bottom.

Get to a Comprehensive Cancer Center ASAP:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Your cancer is quite aggressive and quite deadly and needs to be treated correctly the first time by specialists that treat 100's and 100's of Oral Cancer patients a year not by someone who has to down in the "food chain" to be told what to do. Next he'll probably pull a book off the shelve and look at some pictures of his radiation machine control panel.

Harley, welcome to OCF. I totally agree with David about getting to a comprehensive cancer center and seeing a doctor who is experienced with oral cancer. Radiation is usually a one time thing and it needs to be done right. Not everyone here gets radiation or has surgery, some have both and get chemo with the radiation to make it more effective.

If the ENT told you they saw no more evidence of cancer but the results arent back yet, then its not confirmed. That sounds like they dont have full info yet. Please get a second opinion and by people who are more familiar with this.

Please ask questions so we can help guide you. There are many very helpful people who have gone thru this successfully that can help.

Best of luck.

This has been quite the ordeal to say the least. I noticed the leukoplakia a few months back. Since I work in an emergency room I had one of the PAs(1) look at it. He said to keep an eye on it.
Once the ulcer formed on it I immediately went to see my PCP(2) who refered me to an OMFS. The OMFS(3) I saw thought it was trauma and refered me to a dentist to have the edges of my teeth smoothed over. The dentist(4) took one look and said you need a biopsy now. So, he referred me to the oral surgeon(5) who did the biopsy. As soon as the oral surgeon got the biopsy results back showing there was SCC he called and told me to go see the radiation oncologist(6) who is suppose to be one that is very experienced in oral cancer. Since I just turned 40 yrs old, the RO wanted to try to get as much of it as possible, if not all by removing it. The RO ordered the PET and I was referred to the ENT(7) that did the partial glossectomy. There was no lymph node involvement shown on the PET. The ENT had samples frozen and checked during the glossectomy. The ENT also was going by pictures taken of the leukoplakia and a scar of the biopsy. He said he was going to have the tissues checked by another pathologist for good measure if you will. I will find out more tomorrow about those findings. I will also look into the CCC and see if they will take a look at me. I asked around the medical circles I know and both the RO and ENT come highly recommended especially by the nurses I know on the oncology floor where I work. I appreciate all your help and concerns. I feel like I am just rambling on now. I mean I have consulted with 7 different Drs, PAs and oncologists...
What are your thoughts?
Does anyone just have SCC taken out and go on with life with no recurrence?

Welcome Harley. I must agree, 7 doctors does initially sound like alot, but once you start to add them up at CancerCare Manitoba, I'm sure I saw that many or more. In addition, the "team" approach - presentation of the case to the Head and Neck Conference involves all R.O.'S, M.O.'s, Surgeons, Plastics, Psycho-Social Oncology, Dentistry, etc, etc, so I'm sure there have been far more than that involved in my case.

Yes, I'm sure there are those who just have the tumour removed and go on with their lives - no recurrance and no further problems. They however, probably aren't posting on this board. That is the oe thing that the regular posters need to remember - there are many who come here - gain the information they need - become advocates for screening, quitting smoking, etc, but never return and are just fine many many years later.

Sometimes our view of the disease becomes a bit skewed because of this. Those of us with recurrances tend to post more. Am I babbling?? lol

This site is a huge source of information and support. If I can help in any way, please let me know.

Donna

In my brief experience on this site and with my cancer I have concluded that SCC involving the tongue is quite aggressive and seldom will surgery be the end of it. I know you want this thing to go away but you won't be doing yourself any favors by looking for the easiest treatment protocol. As you and your doctors learn more I'm sure you will glean what is best for you. If it was me I would hear what your current "team" thinks is the best treatment and then see if you can take all that info to a CCC and see what they say.

Where are you in Texas? MD Anderson is one fo the top two CCC cancer centers in the US.

Yes, people do have SCC surgically removed and go on without a reoccurence. Look for Jerry Wilcks posts. The more advanced cancers usually also have radiation and chemo. While neither of my bouts with cancer have been on the tongue, I am still bouncing around here many years later.

While you sound like you are in good hands, do get a second opinion at CCC. This can be very aggresive and needs to be seen by people who see hundreds of these a day.

Take care,
Eileen

Harley...I am by no means an expert but I would not get radiation before you talk to a doctor at CCC. I was diagnosed with stage 1 SCC and I have had 4 partial glossectomies. I have seen 3 doctors and very good cancer hospitals and none of them think I should have radiation. Who did your partial glossectomy? Was it your ENT?

Please get a second opinion before you do anything. Like Christine said, radiation can only be used one in the same spot.

Harley,

I am the one that Eileen has referred to. By no means, just because I had surgery only and am around to talk about it 4 years later, does that mean that you should not heed the good advice that you have been given here.

I went to Fox Chase CC and was seen by an experienced team of docs. The decision to do surgery only was not taken lightly, but with the chief of head and neck surgery doing the surgery and a radiation oncologist checking in, I am confident that in my case, this was the right course of treatment. Not everyone's situation is the same. I might add that I also had a modified neck dissection to be sure that there was no cancer in my lymph nodes.

You should definitely get another opinion and no matter how far you are from Anderson, I would go there.

Good luck.

Jerry

Harley, my cancer was not in my tongue, but on my maxilla and hard palate, but I, like Jerry, had surgery only, along with a neck dissection. I actually begged for radiation, so that I would feel like I had used all the weapons available to me. My dr. said that in my case, he felt that he had gotten it all, and that he wanted to save the radiation to do later if I had another primary. He felt certain that I would not have a recurrence of the same tumor. I was nervous about this decision and went to M.D.Anderson for second opinions. They agreed with my dr.'s choice of treatment.
Jerry and I have discussed our surgery-only treatments, and, while we are a little nervous about them, we are thankful that we didn't have to have radiation.
What you need to do is to get to a CCC, and if I lived in Texas, there would be NOTHING keeping me from Dr. Weber at MDA!! Nothing! They are called upon for second opinions all the time.
I also know, knowing what I know now, that my psyche would have been better off if I had had my total treatment there. Even though in retrospect, I have had excellent care and a beautiful surgery at our state university's teaching hospital, I have realized that I would have been more confident if I had gone to the "top of the mountain."
If I have more oral cancer, I will be at MDA in a heartbeat. Their team approach is designed to give you the best medical advice available, advice based on hundreds of cases just like yours.
You could be sitting in Dr. Weber's exam room in a week if you call on Monday. You can't make the decision by yourself! You aren't equipped. That's putting unfair reponsibility on you.

Good luck!

--Colleen