I know this might be bad netiquette but I am posting this here after posting it in another topic because I think it really belongs here more. I'm sorry it's a little long.

Here's what I meant topaste in that other one before posting it. Sorry, I think the dry run really has me rattled.

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? I feel a littel helpless about what I can do right now, though.

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 while in pain (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 appreciated.

Sometimes the techs will put the headrest thing in backwards or they'll use the wrong one for a different patient and that will hurt like crazy. Let them know that immediately. They are supoosed to keep you stationary not torture you! It shouldn't be that uncomfortable. I would have signaled them to stop what they were doing and make appropriate adjustments. I was Dx'd in November of 2002 and started treatment at the end of January. It would have been pushed off further if I had the extractions they wanted me to get (which I refused). Bear in mind also that once a week they will take some alignment xrays on the LINAC which will add 10 minutes or so in the mask for that day.

I think that you need to track the doctor down and get some assurance that all of this is happening for your best interest, if you get my drift. It is a little mi9nd boggling to consider how high the volume is of cancer patients in almost all treatment centers, it doesn't surprise me that they forget or are minimally responsive. We really have to be our own advocates. Check your computer monitor daily to insure that your name is on the treatment plan screen. There have been occasions where the previous patient didn't show up and someone was treated for prostate or some other form of cancer instead.

I took anti-anxiety meds all throughout treatment and that helped me to relax a lot through the process.

As Gary said you have to be your own advocate in this process. The squeaky wheel gets the oil!!!
Theres no way you should have pain from the positioning of your head and neck for the treatments. TELL THEM right away so they can make the proper adjustments for you. There should be camaras and microphones in the room so you can let them know during treatment. My rad techs were great people. Im sure they also don't want you hurting from the positioning of your body.
You want to have confidence in your medical team to ease your mind. One thing I've learned is that all doctors are human just like you and I. They are not perfect. Not returning your calls is unacceptable. Let them know this.

My IMRT treatments only lasted 15 minutes.

Best Wishes, Danny Boy

The headrests are supposed to be different for each patient? Like molded to their head or something? I don't think that's the case here.

I think they were trying to line me up to the same position (exactly) that I was in for the CT scan, where that same spot on the back of my head also hurt by the end but not quite so badly. Once they've done the CT scan and whatever they did today (they did take alignment xrays) with me in that painful position, am I right in thinking they'd have to do everything over to change it so I don't hurt?

I did say soemthing today. Apart from letting out agonized moans I don't know how I could have been clearer--as soon as it started hurting I said "this is really painful in the back of my head--it feels like it's digging into my skull and they said "well I'm sorry but there's really nothing we can do to help with that right now" (technician) and "alignment is very important" (physicist). When they next came back into the room, after about 15 minutes more of the rock-digging-into-head pain I said to them "there has to be a way this isn't so PAINFUL. It feels like someone is trying to crack my head with a rock" and they said "we're over halfway through do you think you can hang in there?". At the end, they did call me a "trooper" and told me on Monday Dr. Z would be there and could give me some painkillers (I really don't want to be drugged to the edge of oblivion just for this. I thought that would wait until the burns and mouth pain started).

They never volunteered that they could do something with my positioning to not make it quite so painful. If that would mean starting this whole thing from scracth, I wonder if they will. Does anyone know if that's what it would mean?

Nelie,

The head rest should not be painful. I remember once that we went into the rad room and put Harry on the table and they had not removed the rest from the patient before. He did not complain but the techs noticed it as soon as they put his mask on. If your treatments are 30-40 minutes (Harry's were exactly 42 minutes until the boosts which were 23 minutes each) then by the time the rad starts making you feel near death you will refuse to complete them.

This I can promise you just from an observer and cheerleader perspective and I am sure that many of the folks here who have experienced the giant machine would attest to that.

Make damn sure that you are as comfortable (i.e. pain free) as is possible now because down the line you do not want to cry mercy and quit.

Do you have a friend, spouse, etc. who can be an advocate for you and/or go with you to your txs?

I think that my husband will tell you (when he can talk again) that one of the most reassuring things for him was that he always knew that I was there making sure that the techs were taking the best care of him even when he wasn't sure how to tell them what he needed. We had the best techs around, IMHO. They were always concerned with his comfort and ease in doing these txs and they were encouraging when he wanted to quit. They helped me to help him and I trusted them completely with his life.

If you do not feel that way about the people treating you.... go elsewhere or at least make sure they do what YOU NEED, not what is convenient for them. If they don't like it, too bad. You are the patient, you pay the bills, and most important of all.... IT IS YOUR LIFE!!

Keep pestering, asking questions, etc. Eventually what they learn (the docs and techs and nurses) is that it makes theirs lives a lot easier if they are responsive and straight forward. Just never let up on them and always remind them that you are there and participating fully in your care.

If you do not lie there still, they can't treat. If you complain and refuse until they fix the head rest then that is what you need to do. Please do not lie there and suffer silently in pain. It is their job and sometimes you just have to make them do it right.

I wish you all the best and I hope this helps a little.

Cindy

I would go elsewhere if I thought there was any way I could do that without adding additional time before treatment. I feel like it's really critical not to add another delay so I guess I will have to stay here and keep fighting for a way to feel comfortable during treatment. Cindy, you're right that the discomfort is so bad that with other things added on top I don't know if I can stand it.

On the advice of the oncology nurse at the medical oncologist's office, on Monday, I am going to try taking one of the hydrocodone pills I have left over from all the previous surgeries/tooth extractions after the comapzine,and before the amifostine. So about 45 minutes before rad. We'll see if that helps at all. I told my husband he may need to really help me push for an adjustment to that headrest too, though, if I'm still in pain because I will be feeling a lot fuzzier in making the argument afrter taking one of those pills.

Nelie,

While much of my radiation experience has become a distant memory, one thing that still stands out in my mind was how helpful the techs were -- it had evidently been drummed into all of them that a key part of their job was making sure the patients were as comfortable as possible during each treatment, given the circumstances. If your techs haven't been taught this, they need to learn it - fast!

Regarding your lack of communication from the radiation oncologist: Is your medical oncologist more responsive? Can he/she intervene with the other doctor on your behalf? Over the years, my medical oncologist has been very willing to "nudge" other doctors if he feels they may be dropping the ball in one way or the other.

Cathy

Hi Cathy, I did talk candidly about this--especially the lack of communication-- to the medical oncologist's nurse who is the ear and often acting arm (she has been an oncology nurse for 25 years and realy knows her stuff)of the medical oncologist (who is super-busy). I said it appeared to me that rad. medicine at the hospital was thinking that the medical oncologists' office was meant to be some kind of intermediary in informing me about scheduling, since I had only heard from the med. oncologists office about when I was scheduled for radiation. She did't seem happy about that and agreed I needed to have better communication with them directly.

The medical oncologist, I found out, was originally at Sloan Kettering. He moved to upstate NY because he wanted to raise his kids here. I think that background, though, gives him more clout with the Roswell Park folks who are running radiation medicine right now (more clout as opposed to, say, my ENT, who is clearly willing to advocate for me but doesn't have specific trianing in oncology). So I am hoping the med. oncologist and his nurse, who I will se regularly as long as I can take the Amifostine, can become my allies here.

Nelie
I just wanted to say " Bless your Heart " you are having a terrible time of it . It makes me cringe just to read your posts. I was a ferocious watchdog for my hubby and would have quite happily killed anyone who put him in that much pain.
It just ain`t right girl... I hope you find a resolution soon.
Marica