Well I didn't want to weigh in here, since this is a VERY knowledgeable group of posters. IMRT is becoming the standard, and yes it can be pinpoint or diffused making it very adaptable to a variety of situations. I talked with Dr. Gillison at Johns Hopkins this AM about a variety of things, mostly HPV, but also radiation. She assured me that while they use a great deal of IMRT there, they don not use it exclusively, and still use the older modalities in many cases, though she said patients are coming in asking for IMRT. Ditto a conversation with Dr. Ang at MDACC who holds the Fletcher chair in radiation and is the president of the American Academy of Radiation Oncologists. At MDACC, an early adopter of IMRT for H&N, it is still not used exclusively, and there are "many" patients which he says are still better candidates for a different radiation modality. The book has not been written yet, and I would like to remind all the passionate here that IMRT does not have any really long term peer reviewed published data in H&N, though clearly less radiation has fewer QOL issues. That doesn't mean that when we look at a 6 or 10 year study it is going to prove less effective, since radiation is radiation. But what it might show ( according to Ang) is that for the doctors and institutions using it, that there is a steep learning curve on mapping it to gain not only the ability to reduce side effects and overall radiation dosage, but more importantly, appropriate and effective treatment patterns, when programmed by someone getting up to speed on the technology. In my own case it was not available, but even if it were, Dr. Ang tells me that it is unlikely with a less than well-defined area of malignancy that I had, that he would have chosen it for me. It goes without saying that even with all of our personal experiences and opinions, we do not know the intimate details of each patient's situation or their doctor's reasons for choosing one modality over another. All this may be LESS about the technology, and MORE about the individuals using it.

Bear in mind that for the most part the real mechanical difference between IMRT and XRT is the detachable MLC or multi-leaf collimator, There does have to be some modifications and software updates to the LINAC. As Brian points out, it's not as simple as all that. Many regional treatment centers are boasting about adding IMRT to their bag of tricks but the RO's there may lack training and experience that will be found at a CCC (for the thousanth time - get an opinion from a CCC at the very least). Where and how to use it depends on the experience of the RO. My RO, for instance, irradiated many suspect areas besides just the tonsils. She is a world specialist in IMRT, even being recognized as such in the Castle book of the top 500 docs in the US. She was also one of the pioneers of IMRT usage and the CCC she teaches and practices at has been using it there for over 10 years. There are limitations for tolerance of rad or cGy levels passing through certain areas and these must be observed to obtain the full therapeutic effect balanced with tissue sparing as well. What Brian says is absolutely true about the long term studies. IMRT was first developed for prostate cancer (as well as many other H&N cancer treatments) so it's common use for H&N cancer is relatively new comparatively speaking. As far as the amount of radiation administered, I have to correct Brian here. Most everyone who receives radiation for H&N cancer gets the full lifetime dose regardless of whether it is IMRT or XRT. An analogy of the difference would be like repairing an electronic circuit. Some techs use a "shotgun" approach and replace all of the components in a bad circuit (or even an entire circuit board) and others find and replace the specific defective component. Sometimes no matter what a tech does to locate the specific component there is no choice but to replace all of the parts (or use the "shotgun" technique).

And it's not as simple as that. Even with XRT, they don't exactly just stick your head under a LINAC and zap it. They still have to define and use specific applicators, beam blocks and shadow trays for protective measures (i.e., minimizing exposure to the spinal cord).

I had to be my own advocate for getting IMRT as they had originally prescribed XRT even though I was a perfect candidate for it so yes I am passionate about telling persons to question the doctors about their treatment modality (whatever it is actually). As for whether or not IMRT is the best thing since sliced bread, personally knowing what I know now, I may have opted fot PBT instead (although it is SO accurate they typically supplement it with IMRT for prophylactic reasons (to insure safe margins) anyway - although probably not the full boatload of ionizing radiation). Last year MDACCC announced that they were committing 200M dollars to an entire new building for their PBT treatment center.

Those reading my posts about IMRT always have a disclaimer that "not all patients are candidates for it". The primary focus here, as Brian has said in so many words, is to survive the disease. Whether you have to carry a water bottle around, or other workarounds for zerostomia is a small price to pay for being on this side of the grass.

It would be nice to have 6-10 year long term efficacy studies for all of the emerging treatment modalities but it has to be balanced with state of the art (of course this includes chemotherapy as well). Probably this is why even the NCCN Oncology Practice Guidelines always recommend clinical trials wherever possible. We're all lab rats when you get down to it (but at least some of us are LIVE lab rats). It is a personal choice to make - use a treatment that is 10 years old or go for state of the art - is there REALLY a choice?!?!

Always push for the best institutions, doctors and treatments. You really don't get many chances with this disease. Mistakes, late and missed diagnosis are serious issues when it comes to cancer.

Another thing is what Glenn has pointed out in the past, there is a danger in stating absolutes here in regards to treatment. There is no "rubber stamp" treatment for this disease. All of us are different, respond differently and have much uniqueness in regards to our body chemistry, age, tumor type, location, staging and health habits. (sorry if it seems like I am paraphrasing you Brian)

Hi all --

I am not sure that this issue (IMRT vs. XRT vs.?) can be resolved on this forum -- it awaits more data based on carefully designed clinical studies. When I asked our RO about "outcomes of IMRT, tomoTherapy IMRT and conventional XRT" he said that "every CCC is doing comparison studies on outcomes and side-effects" so hopefully more information will be forthcoming.

Minnie -- You should not feel bad that you did not receive IMRT -- time (and these studies) may prove that yours was ultimately the better approach!

However I do think everyone should at least ask (at the initial consult) if they will be receiving IMRT, and if not, the reasons why not. If there are good reasons for a certain treatment modality, the radiation oncologist will not be reluctant to share that with the patient. There may be excellent clinical reasons or it may be because the RO does not have the experience (or equipment). These are two very different scenarios which could affect the success of treatment.

It is also important to obtain -- whenever possible -- second opinions on diagnosis and treatment in cancer cases, and in fact many insurance plans require this (mine does, for example). We consulted at Hopkins and Sloan-Kettering and both centers agreed on Barry's DX and also, general treatment plan (chemoradiation, IMRT or in case of Hopkins, tomo-IMRT). This of course made us feel much better about the chosen course of action.

If one of the top CCCs want to use what we are calling "conventional XRT" (rather than available IMRT) they will explain why. At Hopkins (where Dr. Gillison is) both our ROs told us that (at that time Barry started treatment) they were almost exclusively using IMRT and in a majority of cases, tomo-IMRT, for HNC. The head of the department had done an in-house comparison study on outcome and side-effects before making this switch and told us he was confident that the clinical outcomes were as good or better and the QOL issue superior with the newer modalities. (I do not know if this has been published). Conventional XRT was being used in certain clinical trials for which it was the protocol, and for patients with disease that has widely metasticized -- into the lungs for example. Or in the case of palliative care. During Barry's treatment period, there were supposedly (per radiation physicist and techs) no patients who were receiving conventional XRT except one man in a clinical trial. But obviously who is getting what changes as the patient mix changes. This month our RO said they suddenly had a lot of very serious advanced cases referred to them, and I would not be surprised if many of these were getting the conformal beam radiation.

Now, when conventional XRT is used, it is -- as Brian notes -- very carefully planned and blocked out so that as much as possible the non-target organs and areas are spared maximum radiation dose. So it really comes back to who is doing the radiation planning. A radiation plan for conventional XRT done by an expert whose major clinical focus is head and neck cancers would probably have fewer serious side effects that an IMRT plan done by someone who treats relatively few HNC patients annually. This is why the OCF web site and virtually every other cancer web site and publication emphasize the importance of getting to the most experienced institutions when faced with such a serious disease. And to get informed up front and to ask the hrad questions. It is, after all, the most important thing in your life...it IS your life!

Gail

Gail, my intention was not to be rude to you, and I don't feel that I was. I'm ok with getting conventional..........I'm here three years later! I don't "feel bad" about it, I just worry that we are making people feel like they are "less fortunate" if they cannot have IMRT. It's tough enough to start the treatment, let alone feel like we're already worse off then most.

Gary, I stand by what I said. I'm glad that you had IMRT, I wish that ALL head and neck cancer patients could. But I worry that we are going to have patients pushing their docs for it when the docs gut instinct is that they need conventional. It's a known fact that many docs out there treating oral cancer are not up to speed with everything, so could easily be talked into a treatment the patient feels is best. I'm sorry you don't agree with me. I never stated that Gail wasn't speaking facts. What I said is that Gails facts do not apply to everyone and if I were a newcomer here, I would be badgering my doctor for IMRT. We can agree to disagree.

Hi Everyone,
We spoke with the RO yesterday and Mom is going to have IMRT x 35 and cisplatin x 7. She starts on Monday.
We go for her feeding tube this afternoon.
My Mom is 76 and I am trying to keep her strong mentally without pushing her too much. At the smallest change in plan she threatens to completely throw in the towel on all treatment.
Thank you all. You are unbelievably generous.

Maybe I didn't make myself clear enough, which is not unusual for me. I never stated that we shouldn't question our doctors about treatment options. Of course we should. What I was trying to express is that if we glorify IMRT as the BEST, then what are we doing to the patient whose RO tells them that conventional is the way to go? What if that patient keeps bugging at their RO until he changes his mind and gives in? This is not an impossible scenario.

Gary, you mentioned Glenn's dislike of absolutes. I agree with him. And I feel like the conversation on this board regarding IMRT might make a newcomer feel desperate for that type of treatment, regardless of any disclaimers at the end of the post.

If only we were all as eloquent as Brian. I never seem to say it right.

IMRT is not the treatment of choice for everyone. It's not the BEST treatment out there. It does have side effects. Conventional radiation is tough, but as Gary said, with an experienced RO tech, it can be less severe, as in my case. I have saliva, my taste is fine, etc.

That's my last word on this subject.

Hi MK,
Can you share with us what changed the doctors initial decision about using IMRT with your mom? It may help those that are dealing with a doctor who is suggesting conventional when they want IMRT looked into. Was it lack of knowledge on this doctors part or has the situation with your mom changed.
Thanks,
Minnie

I keep looking at Atlantic City and wondering what treatment center you are going to? If it is local, is it outpatient of one of the major cancer centers?

Take care,
Eileen

I had no choice when given the treatment for my cancer 4 years ago. Neither was I aware that there was a 'better' type of radiation available. I was put in a clinical trial and that might explain why XRT was used and not IMRT. Before I became the member of this forum, I felt fully satisfied with the given treatment, my recovery and so on but then the more I read, the more I found myself ignorant especially over the issue of IMRT Vs XRT. I even felt a bit upset and had a sense of being 'cheated' by my doctors when people here kept on saying how good IMRT is. Fortunately, in January, I had a chance to share my cancer experience in an international medical symposium in Hong Kong and was able to meet another speaker who had just completed his treatment last December to his stage 4 tonsil cancer. He is an Australian and received the treatment in the same hospital as me. He told me that he didn't get IMRT, either and was so pleased with his recovery. Both of us need not take any water throughout our talk and the audience could hear clearly what we were saying. Apparently, IMRT is not yet the standard form of radiation in our place, for some reasons I am not sure. After the encounter, I don't feel bad about not receiving IMRT anymore because I have won the battle with a weapon considered less effective by some people here. I am not sure of the substantial difference in the quality of life between the 2 types of radiation. I need to travel with a bottle of water with me but that is very common for people to do the same here. Moreover, I usually end up with half of the bottle full when I return home. I need not wake up from my sleep because of dry mouth. Sometimes I really wonder if I were given IMRT, could I recover so well or could I recover even better.

Karen

I think this threaed has produced some very valuable infomation, and anyone getting ready for radiation treatments will benefit from reading all the various opinions here. We are lucky to have such informed individuals participatijng on this message board. I think the net of these discussions is clear and we should put this thread up in the FAQ section at the top of the message board. Thank you all for weighing in. One of my favorite and balanced posters is Mark, who has not voiced an opinion. If you are out there Mark let's hear from you, and perhaps you would in your post distill the conclusions pro and con (which you like to do in your posts so much) based on what you get from this thread.