First, I would want an answer to why the tumor board decided to do chemo only. Why would they not do the standard of care, which would be chemo AND radiation? Is it possible that she got this wrong, which might mean that they wanted to do chemo FIRST, and after this do the radiation. This is also a current common treatment protocol in stage 3 and 4 cases. Since there might be spread of the disease out of the regional area, the chemo would deal with this if it was begun early, and it is also done to reduce tumor bulk prior to radiation to reduce the life long quality of life issues to go along with radiation, and reduce the radiated area, which has local consequences if vital structures might be in area to be radiated. These are suppositions on my part not having all the facts, but reflect common, current treatment paths. If he isn't on one of them why?

So first, I would want to be sure that she completely understands the tumor boards recommendation in its entirety.

#2 IF she heard right, then the tumor board, for someone that is not even a stage 4 patient (I am one now 11 years out from treatment), has decided on what amounts to palliative (non curative) treatment. This makes no sense. Perhaps it if this is true it is time to consider a simultaneous second opinion from another institution, since essentially choosing a non curative path for someone who isn't at the most advanced stage of the disease, seems odd. Given the state of his disease at time of surgery, I doubt that surgery by itself was ever the concept for a complete treatment protocol, and perhaps this was never completely understood by them. And what has changed is not surgery followed by radiation, but now surgery followed by chemo, followed by radiation.

So I would want to be sure, that since all this (at least here) is one person telling another person who is telling another person and I am not sure that everyone really nows what the plan is. IF this is the total plan, a second opinion is a must or at the very least, a complete discussion of WHY is in order to fully understand what perhaps has not been explained.

None of your posts have detailed what diagnostic tests he has had. What scans etc. The reason I ask is there is no comment if this disease has been found to have spread out of the regional area into some place that would make people think of things differently. Please post what was done diagnostically.

Lastly, any group of doctors that are not wiling to provide psychological support in both face to face dialog with a doctor trained in such, and chemical assistance, seems cavalier given the level of his distress. Perhaps the doctors are insensitive to his distress, and if so, someone should call them and actually use the word suicidal. If you then don't get the proper actions, make sure that the department head and the hospital admin people know the situation. That word is going to trigger thoughts of liability and more in their minds.... this will change their level of involvement for reasons of self preservation.

Last, please do not forget that a young man has lost his vision of himself, along with his actual voice, future employment opportunities in what is already a crappy employment economy, and probably a full load of self esteem has left as well. This I know something about. I was a guy who had been the CEO of a company of international reach, I (please excuse the ego statement but I have to describe how screwed up and extensive my self love was) had a life of being surrounded by attractive women, powerful friends, and more, and I thought that was over. (Clearly I didn't know what was important in life at that stage of things). I was suicidal. For real. And I could not see a future that had a me that I liked in it. It is common. That he would dive off the deep end emotionally is not uncommon, but it is reversible.

So that's a let's get everything straight perspective first. But besides the understanding issues, and even a possible change of treatment venue if these guys do not have the answers you want to hear. So lastly, he needs to believe that someone, perhaps someone worse off then him at the same point in treatment time, would be worth talking to... or given his likely difficulty in talking - listen to. I volunteer. I bet others here would offer to talk to him as well, or at least communicate with him in writing. You should convince him to come here to the board. He doesn't. He needs to. I relate a lot to Eric, Charm and others that have drawn a really tough hand of cards. They are working through it all, they know what he is feeling in spades, and they would be good people for him to hear from. Get him to consider it. He needs to hear something positive from someone on the other side of most of what is ahead of him. As much as you love him and want to help, somethings are best said guy to guy, and from someone who has lived in the same deep hole as you.



Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.