OK, so here's the update part. First I was told I would be able to start rad April 4th but I had to have two teeth pulled and some roots that had been left from a previous tooth extraction drilled --that happened March 22--the dentist said that needed more than 2 weeks to heal and the rad. oncologist didn't want to do the CT scan that starts the whole radiation plan until my mouth had healed from dental surgery for a week.

So I had my CT scan the 29th and was told raidiaton would probably start the 11th, in two weeks. I don't know when or why that changed really. When I hadn't heard anything by the 6th about scheduling I called them and was given a vague message that "Dr. Z will call you Friday to let you know how things are going". I griped about how I had been told last week that Monday or Tuesday of next week things would start and met a stone wall of ignorance from the receptionist (who had been there when I was told that).

Then Friday Dr. Z did not call back--actually he wasn't even here Friday but at Roswell Park (he's only here 3 or 4 days of the week) and I was told that if he hadn't called back that's because he didn't know when things would start yet. Finallyn this past Monday I got a hold of him and he told me the dry run would be today and things would start Monday.

Meanwhile, I was diligently doing my own research on why the folks at Dana Farber thought it was really urgent to start the week of April 4th and found the article by Parsons et al. which I know I've seen referred to in here (though I can't rememebr who did it or where) about the importance of it being 100 days or less between surgery and end of treatment. If you make the surgery my first surgery (not the one where he went back to be sure he got clean margins) I will be way over that. I am now starting Monday the 18th and that will be 68 days from my first surgery. If you add 45 days to that (6.5 weeks), I will be at 113 days. Even if it had started this past Monday it would be over 100 days.

I do realize it was only an effect for people who were higher risk in their sample, as defined by having 4 or more of the risk factors they listed, of which I have 3, not 4. And the people in that study didn't have concurrent chemo and the good thing about this delay is my breast incision is (finally!) almost totally healed from the abcess so everyone agrees I can start concurrent chemo this coming Monday, not have to wait at all.

But I was still a little panicked about the delay and even MORE panicked about the bad comminication (as in non-communication) with my radiaiton oncologist's office that there WOULD be a delay from what they originally said and also even this week when they finally scheduled things--I never heard from them anything was scheduled, I heard from the medical oncologists office because I have to go there first for Amifostine and then right after for the chemo. And I had to call yesterday to find out the time today for the "dry run"--I don't know if they would have even bothered to call me at all if I hadn't.

This seems very unacceptable to me. Leaving me hanging stressed me out badly too until I finally tracked Dr. Z. down Monday and got a clear answer about when things would start. I knew I might run into some issues deciding to have treatment at this new extension of Roswell Park that just opened January but this doesn't bode well for the rest of treatment, does it?

OK. And here's the whining part. It's about the mask and the thing behind that cradles(not the right word in this case) your head. I don't mind the mask pressing into my face so much but today it felt like there was a sharp rock in back of me digging into the base of my skull and in the 40-45 minutes the dry run took I was in horrendous pain from that for at least 30 of those minutes. It felt like my head was goung to crack open--the only thing I can compare it to was a bad migraine--but it wasn't a migraine--as soon as they let me up the pain went away.

I had taken an Aleve before going in there but obviously that didn't do a thing. My head and especially my neck are very asymmettric--more than most people's. I was told by a physical therapisy that I have a msucle that atrophied in my neck probably when I was very young or in utero and another muscle took over and so it looks like my neck is crooked constantly. But I think they are positioning me in a way where I am artifically straight for the radiation and somehow that damn thing behind my head feels like it is going to penetrate my skill any minute. I told them it was pretty bad but I hung in there--even though I was actually in tears by the end of it. I can deal with staying still and not moving at all without much pain but to do that for 40 minutes (they said the actual time for the real thing will be 30, but still) was HARD.

Suggestions/ advice about how to handle both issues (the uncommunicative rad. oncologist and the head pain during radiation) would really be appreicated.

Nelie,

I did not have to endure radiation therapy and so I have no real advice to offer you but I just wanted to say that I admire everyone who has gone through it. When I see those masks and I think of you on that table every day, I know I would not have made it through without Valium. So I guess that might be my advice -- how about a muscle relaxant for your neck, like Valium or Flexeril? It would certainly make it easier to get through those treatments.

Good luck -- Barb