Sorry it's been a while. We didn't get very good news from the PET/CT. There are now three new areas. Right parotid, right paralingual, and left Thyroid. Also there was uptake in the anal region, but the oncologist thinks that was artifact. He now has to have a Thyroid scan and a Colonoscopy before he can begin treatment. The waiting is agonizing for me--I feel like if within six weeks of the operation, the cancer is back with a vengence, how can they wait like this? We also don't even have an appointment yet for his port placement. Now we will be into December before chemo and radiation can start. I just get so angry at what I see as a broken system. When treatment does start, we know it will be Erbitux and IMRT again. We have not had our appointment with the RO yet, that is this Wednesday. Ron has it in his head that he does not want the PEG tube again. This worries me, but he knows what to expect this time, and I feel like it should be his decision. I guess if he is losing too much weight, it could be put in during treatment. Three years ago, he could afford to lose the 50-60 pounds he lost (and that was with a PEG tube). Now he really can't afford to lose that much.
Ron loves his team, but I am wondering if we need to at least get a second opinion. There is a cancer center in Madison, that's only about an hour from us. When we saw the oncologist for the PET results, he basically told Ron that there would be no more surgical options at all, we would just be treating from now on, and trying to buy a few years. He said that "If we're lucky, we will get another three years." That was hard to hear. I told the doctor that we would like to do some traveling, and asked him to let us know when we should start. He smiled and said probably after Ron is done with treatment and feeling better we should begin. I know that he has no crystal ball and Ron may do better than he thinks, but it scared me. I don't want to lose him, especially not that soon!

Have the majority of you gotten second opinions, or have you stuck with your original team? I don't know that Ron is even interested in a second opinion. I know that if I made an appointment somewhere else he would go, but would never think to do it on his own. Thanks for all your support.
Lori