Dear Kate,

I know that our purpose is NOT to diagnose, but we can add our experiences to your body of knowledge. You are smart enough to know that each case is different.

My cancer, unlike most on this forum, was on the hard palate (and also on the maxilla,) so it is similar to your mother's.

My surgeon said that we are fortunate because these palatal cancers are sometimes more easily removed totally, without recurrence. I hope he is right!!

I had "aggressive" surgery (his term) and he assured me that I have clear margins. I also had a neck dissection on that side, to be as certain as possible that I did not have metastasis. My margins were clear, and my neck nodes were negative for cancer.

Based on these results, he did not recommend radiation. I begged for it at the time, and he said it was destructive and it was not called for according to treatment protocols for patients like me.

Now...if I have a recurrence (sounds ironic, doesn't it??) I will still have a weapon to use.

Yes, it has made me nervous but I am so much more comfortable, since my mouth is normal except for this big hole in the roof of my mouth and the loss of five teeth and a third of my upper jawbone.) Still this loss is nothing compared to what some people here have to contend with.

I have a friend who has had similar surgery, and her circumstances were different from mine, and her surgeon was not able to get clear margins, so he recommended that she have radiation. Later she needed more surgery, and she had trouble healing properly.

So.....you are asking for advice...Here is mine: Go as fast as you can to the nearest CCC and get a second opinion. They need access to your pathology report, as well as to your slides and samples, most likely. If your ENT did not feel that your lesion was cancer, then he did not necessarily make certain that he got 1 cm of clear, healthy tissue around it. If it isn't cancer, then you don't want too large a surgical wound. If it IS cancer, then you DO want a significant margin of healthy tissue to be removed.

I am betting that your mother might need either more surgery (which won't be as bad as the first time) to be certain of her margins, or at least selective biopsies of the current margins.

I am also betting that at 75, if they have an equal choice, they will suggest the surgery to clarify the margins, rather than the ordeal of radiation, which leaves the patient with permanent oral problems.

If I were her dr., I would first be as certain as I could be that I had gotten clear margins...It's worth going to sleep one more time.....and then if I find that the cancer has invaded, and I can't get the margins, then I"d consider the radiation.

I was given the neck dissection because my lesion had been overlooked (sound familiar??) and had spread along my gums and onto my hard palate. Because of the time and the size, my dr. wanted to be certain. I welcomed the neck surgery. Not only am I assured that I had no metastasis, but now the primary pathway for mets has been removed.

Of course, nothing is 100% sure, but we've done all we can reasonably do for now.

Please go to a CCC for a second opinion....and I would consider staying with them for a treatment plan....and keep us posted. Your dr. will understand if you decide to stay with the cancer center.