I think that any of you who are suggesting that once a person and his doctor are off on a course of treatment, in this case conventional radiation, that you are not helping here and doing a disservice to the original poster by suggesting that MIDSTREAM he approach his doctor with the opinions of a bunch of lay people who do not know his individual situation or his doctors thought process, to change his course of treatment. When did you guys get your MD's? I must have missed that part. This creates doubts that are not necessary at this point in the patients mind. What are you people thinking?????

You want to suggest BEFORE someone enters treatment that he ask his doctors about IMRT and the benefits in HIS case, do so. But what is going on here is off base, and if any of you thought about what you are creating in this person's emotional state with new potential doubts, you would realize that it is potentially damaging.

As was mentioned he is at a CCC. Maybe some of you might consider that given the little information you have to work with about this patient, his doctors, his condition, and any reasoning behind the decision making, that he is at a qualified CCC, that you don't have enough information to work with. Our purpose here is to offer help. That help is based on our own UNIQUE experiences, and those damn sure do not apply universally to every other cancer patient out there. Suggesting , by inference to your own high end experiences, that he may not be getting the BEST treatment out there is just BS.

Gail if you have be assigned a radiation physicist, I would like you to email me his name. I would like to have a discussion with him/ her.

Gail (and Tom) ,

I believe Tom is like me. His cancer was not base of tongue, it was on the oral tongue, and he had surgery of the tumor, with clean margins, BEFORE radiation and he has no cancer in his nodes. What this means is that *there IS NO TARGET* in the same sense that there is for stage III or IV BOT cancer that has not been operated on. So the fact the IMRT and Tomo can deliver more radition to a target is not of such clear significance here as you seem to think.

Although I had IMRT (it was the only game in town basically), I can easily see why general field radiation, such as Tom is being given, might be thought to be more effective under the circumstances. Especially since my impression is there's still not a lot known about the pathways by which cancer might spread along nerves--which is the issue of particular concern if, like Tom and me, the tumor showed signs of perineural invasion.

I agree with Brian that this sort of difference is why it's important not to speak in absolutes here and get someone worried about what sort of treatment they are receiving midstream.

I hope I'm not adding to the fray here too much by posting this.

Nelie

Tom said his SCC was "back of tongue" so not sure whether that was at base, or on oral tongue. In any case, Hopkins still uses IMRT or tomo-IMRT for oral tongue cancers, although these will often have had surgery first. The people there currently being treated for this condition are on IMRT (also getting concurrent chemo). There are a number of "unknown primaries with nodal involvement" all getting tomo-IMRT or IMRT -- the target field simply includes all the potential affected areas, according to discussions with these individuals.

I want to add I was not being flippant when I asked for the data which finds XRT superior to IMRT for certain types of HNC. These sorts of comparisons are the way doctors make a decision to move away from an older treatment protocol to a newer one, or stay with the older method because it is superior under certain conditions. This is happening all the time in cancer treatment as advances are made, or -- found not to be so "advanced" as once hoped...so if there is data showing superior results for XRT over IMRT in specific circumstances, preferably a study done at same institution with matched cohorts, this would be very important to know.

I agree with Brian that these sorts of issues must be discussed before treatment decisions are made -- so that everyone is comfortable with their decison and don't feel they've been rushed into something. Midway through is not the time or place to bring up any doubts and I apologize for this, and will cease to post on this subject.

Gail

I feel I need to jump in to re-emphasize that having XRT does not always mean permanent quality-of-life issues. When I had radiation 16 years ago, conventional radiation was my only option (and given my diagnosis, I still think it was probably a good idea). I did have major dry mouth issues for many months afterward, but with a combination of medication and Biotene products, they have lessened substantially over time, to the point where they have relatively little impact on my eating or speaking.

Case in point: Last weekend I was out at dinner with a bunch of my in-laws at a Mexican restaurant where I've been before. I recommended that they all try the stuffed jalapeno peppers that I've come to enjoy. Everyone else at the table said they were much too hot, so I was left to eat all of them by myself!

Cathy

Gail,
I am not a doctor but what I have seen here is that often tumors that are poorly differentiated and invasive are treated more often with XRT.

And I think that you have it backwards, new data would suggest that IMRT may be superior for certain H&N types rather than the other way around. It is unlikely that they would do ongoing efficacy studies for well established treatment methodologies.

IMRT has only been around for 10 years and in relatively common use for about 5. When I got mine in 2003, only the CCC's had it. Now most regional treatment centers have upgraded their LINACs with an MLC (Multileaf Collimator) as well. So the long term data on efficacy of IMRT is still coming in. The same LINAC that produces XRT is also used for 3D conformal and IMRT - it's a matter of the collimation techniques and apparatus.

I questioned my treatment plan pre Tx and got it switched from XRT to IMRT. I am satisified that it was a good choice (for me). Every patient and every tumor is different so what works for me may not be the best thing for you. They did target ptotential areas as well.


Treatment options need to be addressed pre-Tx. It doesn't serve any useful purpose to go into it during Tx other than to ratchet up additional fears and doubts.

Glenn,
3D conformal is very similar to IMRT, in fact, an earlier incarnation of it. Just as tomotherapy is the latest incarnattion of IMRT.

Nelie,
I have heard 18 months mimimun for salivary gland recovery (and my personal experience as well).

Hey Gary,

It is also the same machine used for SRS, I had my SRS in June on the same machine I was treated on in 2003 and 2005.

Glenn

Gary, thanks for that info. It helps me be patient (not my natural strength I'm afraid)!

tom,
i am not an expert but will just pass along my experiences.
i had 30 imrt treatments to a oropharyngeal primary and a fleshy lymphnode that popped up.i had my tonsils out first though as doctors thought this would be my primary. petscan smelled out the oropharynx.
side effects for my part were somewhat minimal. thick mucus hard swallowing and lack of taste during treatments. mucus went away first then taste started to come back as swallowing got better. salty came back quicker and sweets still have a bitter taste that hasn't gone away.
after radiation we agreed i needed a neck dissection. all lymphnodes on left side are gone and all were clear. trees twist easier than my neck did for two weeks. physical therapy is hepling as it has been 34 days since surgery. shaving is a real bear. i don't even try a straight razor right now. and if i don't feel like it,i'll skip a day or two. the electric razor i have is good. if you use a straight razor get your wife or someone else to shave you. good luck with everything and my family will add you to our prayer list. mo