Erik has definately re-occured. Last Monday (2 years to the date of last rad appt)they took a 2x1 1/2 inch piece from his lateral tongue. He also had a PET/CT and the diagnosis came yesterday-T1N0M0. Not as bad as we had feared, but our ENT said that since she got clear margins, she didnt think treatment would be needed, and that we needed to know that this was probably going to be a cronic thing, that he would most likely continue to re-occur. So did we just dodge this bullet and are we in for more? We made an appt with the oncologist just to see if there is anything more. It only makes sense that if there were clustered cells on his tongue that there would be about a badjillion floating around inside him just looking for somewhere to land. I could totally be wrong but I am curious to know if anyone has had a small re-currance and what has been done in terms of preventing the little monster cells from clustering again? What "could" our options be?

Jennie,

Did she explain why she made that statement that this may be a "chronic thing"? I hope she got it all and I hope she is wrong.

What she said, was that "the odds were not in his favor and that this cancer would continue to re-occur." What she called a "chronic SCC" " A re-occurance often means a breakdown in the DNA structures and that his body is carrying SCC in it. There may not be any more(detected) clusters of cancer cells at this time but that it is just a matter of time before they congregate and find a new place to invade."
We are wondering if there is a "preventative" chemo regime, nutritional changes or anything to kill off any other "non"detectable cells? We will be seeing the oncologist tomorrow, but are also considering a trip to MD Anderson for a second opinion.

Jennie,

I'm not sure about currently, but when I was diagnosed last year and was preparing for surgery, MD Anderson was doing a trial that was looking at preventing recurrences. It was precisely what you were talking about, some sort of chemo. I had an opportunity to participate, opted not to for a variety of reasons. Still MDACC is a great place. The folks there were outstanding and I would wholeheartedly suggest that your notion of getting a second opinion there is a good one.

I don't know the answer to your question, but I would, as a 2 timer - be very interested to hear their answer. Certainly no one has offered me any clue as to why some people have a recurrance (approx 33%) and some don't. Let us know.

Donna

Im a little fuzzy on details, even though we have been through this before, I still went into survival shock mode yesterday while the Oncologist talked to us. He told Erik that he has a very large amount of cancer cells traveling through his body, and they may not have invaded any other organs or areas at this time, but that it is likely for him to pop up with another cancer very quickly at this point. So he wants to do another round of chemo. I totally missed the name of the first two chemo drugs, but I did hear Erbitux. My mind just shut off at that point. Erik had such a horrible reaction to the Erbitux, and he scarred so badly from the rash that they actually had to lower the dosage for the last three treatments last time. Last time he only 8 weeks of chemo (plus rad) this time he's getting a chemo cocktail w Erbitux for a minimum of 12 weeks.
Our doc is also sending us to Seattle this week (before he starts treatment) to meet with a Head and Neck specialist. He is wanting this doc to start following Erik as well. So thats the scoop.

Jennie- Good luck to you both. We are still battling this monster also. During the Cisplatin and rads my husband had a positive node appear in his neck. The PET scan done before the surgery showed mets to his chest. Following the Erbitux a third PET showed a recurrance under his tongue and worsening of the nodes in his chest. I'm right there with you in the shock survival mode. He is on Taxotere now. He will have about 8 treatments before they do another PET. I'm beginning to wonder if my husband has the chronic SCC that you doctor talked about.
Sue