I'm right in there with Mark. To tell you that they can't do IMRT because they are understaffed blows my mind. I would run out of there as fast as I could and find a real treatment center. Are you going to Roswell?

A few weeks shouldn't make a difference. There are huge differences in QOL between XRT and IMRT.

Paul, I cannot agree enough that you should look elsewhere if you can.

And Barb, you bring up a very good point. I din't go to a CCC either, but I had a very experienced surgeon and plastic surgeon, and a very experienced rad operation as well as medical ongologist. And that was 3.5 years ago. Just an aside, I saw the IMRT treatment plan worked up for me and it was 1.5 inches thick! Bottom line, a CCC is great if one is available, but saves are being made every day in good hospitals. With all our urging that people get to CCCs, I don't want those folks who are being treated elsewhere to feel they are not necessarily getting good treatment. Even in our small town (where I was not treated) we now have IMRT and a head and neck cancer specialist. Things, they are a changin'!

Edited to add that there were well more than 100 days between my surgery for Stage IV dx, and the end of my rad/chemo. And I am here to tell about it, so that should not be considered a hard and fast rule.

Paul, I mean this with all the respect of and for you: Your wife and small children want you here in the next 20 years. Don't let anything get in the way of you receiving the best treatment you can find. Hitchhike to the next place if you have to. (I am not being glib) I am dead serious. I am not talking about jetseting for fun! This is serious crap and you don't need some $6.50/hr scheduler ruining your life.

IMRT is not just available at CCCs -- it is considered the standard of treatment at many larger local hospitals as they acquire these newer machines and train their staff. You might want to check this out -- in suburban Maryland for example, both of our closest general hospitals offer IMRT and a friend went to one for his advanced prostate cancer because (at his age) he was just not up to driving 35 miles each way to Hopkins 5x a week. He is doing fine and was very impressed with the treatment team which included oncologists from the U. of MD medical school.

So you may have other options...

Gail Mackiernan

Has anyone had the RADPLAT treatment. This is where they place the Cisplatin through IVs direct to the tumor, and then radiate. Can this be couple with the IMRT? or PBT?
Can anyone discuss this path?
Mark

Well it is 7am July 22. I have worked a night duty at the ME's and been kept busy unfortunately. I have an 8 am appointment at the so called cancer center at the U of R. No-one from the Radiation Oncology Department called me back to explain why things were being changed. I am tired feel crappy and I am not in the mood to discuss the finer points of radiation oncology treatment planning. At this point unless something stunning occurs at this appointment I believe I will be seeking an opinion from Sloan Kettering in NY City.

Hi Paul --

Both ACS and NCI strongly advise getting a second opinion on any cancer diagnosis. This is both on the pathology and staging and the proposed treatment. In fact, some insurance carriers require it. It is NOT a slur to your first doctor to seek such an opinion; when we went to Hopkins our doctor freely gave us the names of 2nd opinion consults (we went to Sloan) and the same thing happened last year with the prostate diagnosis. (In fact for that we got 3 opinions as Barry's treatment options were much greater).

I did google several articles last night which compared IMRT to the older technologies and these seemed to reinforce the advice others have given you to get IMRT if you can.

Best,
Gail

Paul, the other thing about getting a second opinion from a top cancer center is sometimes, if the rad oncologist there is willing to talk diorectly to your local treatment place, it can shake them up enough to give you the treatment you need. Getting the second opinion I got from Dana Farber, and the fact that teh rad. oncologist there was willing to talk directly with the chief rad. oncologist at Roswell Park, got my entire case reconsidered by the rad. oncology group at Roswell and got me the treatment I needed (using IMRT to spare the parotid) at their new extension here.

I can relate to needing to stay locally but I'd suggest you look around at other places than U of R. I just found out that the tiny hosptial in Cortland NY now is getting IMRT! There may be some other smaller places nearby you as well. At the very least, do try going to Roswell Park for a second opinion.

Today I saw Dr. Chen, nicknamed the head and neck cancer queen by the social worker. She was very nice, very professional and when I had finished explaining what had happened to me, she apologised she said she would personally take my case over that I will be getting IMRT albeit delayed by a week. When I mentioned getting a second opinion she just wanted to know what records I needed. I liked her positive attitude, she said because I am "gross disease free" I have a much better prognosis than my staging implies. The radiation regime post surgery is also likely to be a lower dose preserving normal tissue better as well. She also said chemo was not necessarily required but what did I want. I said hit it with everything you have got. I see the medical oncologist Aug 9.
I had a simulation and they made the mask. I also had the CT with contrast. Do you ever get used to that bizarre feeling and taste when they put the dye through you?
In short it would appear I have some time to consider my 2nd opinion options. Thank you everyone for the help and advice so far.

Paul, My husband was treated at a CCC (ranked #13 USNews) and we were rather dismayed with the radiation department there. Just learning about options at the time (and about cancer for that matter), we learned about IMRT and, of course, wanted that treatment for him. Their policy is to use IMRT for patients not having surgery but to use standard radiation for post-operative patients. He had surgery, and I had read the following study "Intensity-Modulated Radiation Therapy for Oropharyngeal Carcinoma: Impact of Tumor Volume" done by M.D. Anderson among others and published in May, 2004, and basically went in and begged the R.O. to give him IMRT. And he did. I later found out that another local cancer center (not a CCC)gives IMRT for post-surgery H&N patients as standard treatment. In talking with the R.O., the impression I got was - 1) this particular CCC didn't feel there was sufficient evidence of better results for post-op patients using IMRT, 2) a lot of their patient's insurance doesn't cover it (??ours considered it medically necessary), and 3) it took a more resources and time to do IMRT rather than standard treatment. But as I said, he did give him the IMRT treatment. In the study I mentioned above, it covered 74 patients (tonsil, base of tongue, and soft palate), 70% of whom were Stage IV (93% were either Stage III/IV). Patients (43) in the study who had both surgery and IMRT had a 92% 4-yr est of DFS rate, a 95% est of LRC rate, and a 94% est of DMFS rate. Only 4 of these patients had chemo. Those who had IMRT with no surgery had a 66% 4-yr est of DFS rate. The study also breaks things down between Gender, Subsite, T stage, Nodal Status, AJCC stage, Fraction Size. It also profiles the side effects and percentages of these for both Acute and Late Toxicity (skin, mucositis, xerostomia, trismus) From what I've read this is one of the few large studies done regarding the use of IMRT specifically. This study also documents the outcomes of eight other studies done using standard rad with variations of +- surgery +- chemo. The Disease Free Survival (DFS) rates are all much lower in these other studies than in the Anderson IMRT study.

I'm 7 months new to all this and I don't really know how you are supposed to view the results of one study - but personally, I liked the odds on this one. Our CCC apparently doesn't view this study's IMRT patient outcomes in the same light that we did.