Karen,
You expressed very well one of the things I was trying to relay to everyone. I think if we just stated the facts on each treatment, the side effects of each, etc., then left it alone it would be great. There is NO person facing conventional radiation that would feel good about their treatment after reading this and some of the other threads on this subject. It's unavoidable that they will feel discouraged that they must have conventional, when they should be reassured that conventional is doable. And, as you said, it can make someone already finished with conventional treatment feel somehow cheated.
Thanks for sharing.

Just wanted to add my two cents on this topic from a longer-term perspective...

IMRT wasn't available 17 years ago when I had radiation (and since my tumor was poorly differentiated, it might not have been the recommended treatment even if it had been available). Some of my salivary glands were removed during surgery, so those are gone for good. Preventive measures such as amifostine weren't around either, and Salagen wasn't even out in trial form until more than a year after I finished radiation. My mouth got pretty well fried during the weeks of conventional radiation from my earlobes to below the collarbone, and the recovery process seemed slow and frustrating.

Notwithstanding all of the above, within a year or so I was back to eating a wide variety of foods, and as more time passed I got to the point where I could eat just about anything I wanted. My salivary function has come back more and more, to an extent I never would have thought possible. I rarely have the need to have a water bottle close by, I sing regularly in a choir, and I long ago got to the point where my quality of life was not affected at all by having had radiation. Most people who have met me in the years since treatment don't have a clue that I ever had head and neck cancer.

I know the medical profession has to do the prudent thing and advise patients about possible QOL issues, especially if they still feel the need to use conventional radiation. However, having this kind of treatment is not a guarantee of irreversible damage. It seems to me the first priority should be to follow the advice of an experienced H&N cancer team as to the best course of action to eliminate the cancer completely. No one can know for sure in advance how their QOL will be affected, and there is no need to assume that conventional radiation will lead to a life of serious limitations and disabilities.

Cathy

One more XRT patient weighing in. I don't think IMRT was available when I had my radiation treatments back in 1997, but even if it had been, I doubt I would have been a candidate as I had an unknown primary. There was no tumor to aim at. I was fried from the tops of my ears to my armpits on both sides. One submandible saliva gland was removed during surgery on the assumption that it wouldn't work after radiation so 'why not'. Don't let them do this to you. I was given Salagen during and after my radiation treatments and lived on Ensure Plus orally for the last 4 weeks of radiation and a few weeks afterwards.

While I needed lots of water or milk to get down food, I never needed to carry a bottle of water nor was kept awake by a dry mouth. There were many food I was unable to eat like bread, crackers, chips, and potatoes due to dryness but any food that had moisture I could eat without a problem after about 6 months. I did have choking problems on certain foods, but avoided eating them. At this point, I don't even remember what they were. Once I became a total laryngetcomee in 2001 and choking was no longer an issue, I am now able to almost anything including chips and some breads. Crackers need a dip. So it wasn't saliva that was the problem but the ability to swallow these dry foods without choking. I'm now 9 years out of radiation and doing fine. My only regret on the radiation is that if they hadn't fried such a large area the first time, they might have been able to treat the tumor on the larynx in 2001 with radiation rather than surgery.

Take care,
Eileen

MK,
to get this thread back on topic, I just read your post and need to give you a heads up. Irregardless of what what radiation she receives - it is no walk in the park. The treatment itself is pretty brutal and the full effects will be felt for some weeks after the end of treatment. There can be many small but potentially dangerous issues from infections, aspiration, pneumonia, nausea, weight loss, thrush, mucositus, zerostomia, etc. It is estimated a month of recovery for every week of radiation.

You will need some help convincing your mother to stay the course. You may want to find a therapist now for her to talk to. Also make sure that her doctors know her feelings about this and if she needs meds for pain, anxiety and/or depression that they take care of it. Elderly people can be very quirky about pain medications. She will need a full care time caregiver to manage nutrition and meds.

I was as healthy as an ox going into this in my mid 50's and it beat the crap out of me.

The main advantage from IMRT is in the QOL issues later. Even with IMRT it was still a good 18 months before I had any significant salivary function return.

I too am curious why they changed horses in mid stream about XRT vs IMRT? I would really be grilling them about that.

There really isn't, nor should there be, a debate of IMRT vs XRT. Ionizing radiation has been used with great success since the 70's when it replaced the standard at the time, Cobalt 60, which had been in use since the late 1800's. There has always been a search for better and more accurate treatment and tissue sparing. Cobalt 60 caused horrific and many times permanent skin damage (especially when it reached its half-life and the treatment time period had to be extended). XRT was a huge leap up from this. 3D conformal then IMRT is merely a small technological improvement (we think - at least the preliminary data is encouraging) and its closely related successor, tomo-IMRT. To paraphrase what Gail said, only time and science will be able to determine the true, long term efficacy, of IMRT. As the XRT people are weighing in here - it has obviously saved many lives. I think that we are all saying the same thing - get the treatment that will save your life based on the best advice from knowledgeable doctors and hopefully being your own advocate and being at peace with your decision. On the forum we can only share our personal experience, strength and hope (especially since none of us are doctors). We could just as easily debate Apples vs. PC's and have the same degree of controversy and passion I am sure.

PBT is yet another relatively new player on the scene with only a handful of institutions providing it worldwide at this time. PBT, or proton beam therapy, is a fascinating approach as it uses a "charged particle" concept so that doesn't develop it's total potential until it is actually painting the exact target. There is no entry point damage. It does require a MAJOR capital investment. Whereas a (9 ton)LINAC can be bought for a few Mil, a PBT system, multiple treatment suites and the 35 ton gantries required for each suite, including a dedicated building is why this costs around 200M to install.

Since I've been "out of pocket" for a few days, I just got to read all of the above, and my mental picture is that of a juggler with 50 balls in the air, 10 of which will explode if they land on the floor. Amy

Well said Gary. Perhaps I was to passionate about it. I just feel such a responsibility where this site is concerned, as do each and every one of us. Without that passion I suspect the board wouldn't be half as effective.

MK May, good luck with your mom and we are here to help if needed. Apologies all the way around for "using" your thread to have a "family" meeting.

Late but still of value...

I am probably the exception for IMRT and I would like to share the particulars. In my haste to remove a lump on my neck and not knowing what I know now and not having the "family" around here that I have now, I found myself in a plastic surgeon's hands, having a lump taken out. He freaked when he saw it and thought it was TB so he just cut some off for a biopsy and stuffed it back in, thinking I would be on an antibiotic cocktail for the next 18 months until the TB cleared up. XRT or field radiation as they worded it would be more effective in erradicating all the cancerous crud that had been unleashed in my neck. It sure seemed to make me feel more at comfortable and appears to have been successful.

Ed

Good grief Ed - that sounds like the worst Dx/Tx FUBAR imaginable! It's amazing you survived. I hope you have a good attorney - Maybe Brian will tesify as an expert witness ;-) But how did you get from the plastic surgeon to the radiation oncologist?

When I joined the site in late 2002 there were only a few people who had IMRT. The vast majority had XRT so you are hardly in the minority.

Ed's post is yet another compelling reason to go to a Comprehensive Cancer Center.