Hi Nancy

The trouble with oral and oropharyngeal cancer is that the gold standard shifts depending on size of tumour, region of tumour, as well as the person themself.

I think the one thing that is agreed is that a dose of a cytotoxic agent (chemo) such as cisplatin in combination with radiation (chemoradiation) is better than radiation alone. However, some patients have radiation alone because the size of the tumour and the predicted involvement of the lymph nodes is minimal.

Back to your question regarding "gold standard": cisplatin plus radiation is the best studied combination so might be considered the closest thing we have to "gold standard" (personally I don't think the term is applicable in oncology where so many combinations are dependent on an individual need). There are also many who think that carboplatin is just as good - it just hasn't been studied as much. Docetaxol added to cisplatin and 5FU BEFORE radiation was found to be very effective which lead to the concept that adding Taxol (which is related to docetaxol) to radiation DURING radiation must also be good. Sometimes the doctors need to make some educated guesses because the trial to prove one way or the other hasn't been done yet or only small trials have been done that are suggestive of a good result.

Your second question regarding a PEG:
Once chemoradiation starts, an operation to install a PEG becomes more problematic as healing would be slower. Here in Australia the procedure is done under anaesthetic and a raw and swollen throat from radiation would cause problems with inserting tubes for breathing as well as the PEG itself (although there is one it can be introduced through the abdomen wall rather than down the throat). This is why your surgeon is concerned because he is the one who will have to deal with any fall out - not your MO. My suggestion would be to consider how much weight you can afford to lose and if the answer is "not much", - get the PEG. If you are reasonably confident that you have enough stores on board to get you through, and you are doggedly committed to eating, and drinking then you may consider trying without.

The reason the MO is suggesting no PEG is because trials have shown people can become quite dependent on a PEG. After going through it with Alex, I think the doctors underestimate what is involved in eating and to suggest a patient would stay on a PEG any longer than is necessary makes no sense to me. The patient must be made aware, however, that swallowing exercises need to be practiced to avoid loss of function or even speed up return of function.

It is not a fun thing to do.

Alex was one of the "dependent" patients and had his for 18 months. It is true that he refused to have it removed for about 3 months beyond when he needed it. He didn't actually use it but wanted it left for a while "in case". I think it was almost a superstitious thing and he was fearful that the cancer would come back the second he got it removed.