I'm a little bit calmer now, thanks be to you people. My earlier posts explained my diangosis via the local ENT guy that gave us films, set us up to a cancer center in Denver, and the whole "I'm sorry" routine. So the shock part has kind of worn off. Going from being healthy and planning out the new year to the "year has already gone down the crapper" phase.

The only doctor I haven't met yet is the chemo oncologoist which is tomorrow. My radiation doctor was a long appointment last week, and my confusion at this point is "What type of radiation?" Little did I know that there were several different types. Both my spouse and I have been reading about IMRT radiation. Not once was the word IMRT brought up.

Since we needed to go in for a CTscan and simuluation today (I now have a mesh mask) I asked about this. They told me what I'm down for isn't IMRT but a "three dimensional" radiation treatment. I asked about the difference and was told that IMRT was used for small tumors and was more precise.

I'm trying to give my medical team every benefit of the doubt, but wanted to ask you folks anyway if I should be worried. Granted at stage IV, I don't have time to waste in getting second opinions.

All this stuff is so new to me and overwhelming,that if we weren't educating ourselves on the internet we wouldn't even have the vocabulary to ask the questions.

Jen

Hi Jen,
I had 3-D conformal radiation rather than IMRT and the reason the oncologist gave was that since I had already had my tumor removed surgically and had a positive margin remaining, the broader 'sweep' of the 3-D radiation was more appropriate for my treatment. It's not possible for anybody but a trained radiation oncologist to make these type of decision.
As it was explained to me, IMRT (intensity modulated raiation therapy) shoots multiple beams and the strength of each beam can be adjusted so that the area that is being radiated can be precisely controlled. This allows one to use IMRT as a 'scalpel' in the sense that it can burn out a tumor very accurately. 3-D radiation uses multiple beams but doesn't adjust the intensity of each beam, so that it broadcasts over a wider area. My treatment ended with 3 days of 'boost' radiation which, as I understand it, is IMRT and was targeted on the tumor bed.
So, this could be very appropriate treatment for you. While time is of the essence, it may be worth getting a second opinion if there is another comprehensive cancer center nearby. They should be able to turn this around in a week or so.
Best wishes for a successful treatment. - Sheldon

Jen,

When I was diagnosed, I didn't have a clue about any of this stuff. I recognize your concern... and wish I'd had this website back then.

If I understand this article correctly, IMRT is used to tightly focus the radiation beam. In my case, also Stage IV, the docs wanted to cover a broader area because the cancer had metastasized into a couple of lymph nodes. They still used lead blocks to limit the radiation to specific areas.

Be sure to ask your radiation doc why not IMRT, but that may be why.

Ken

Hi Jen,
I had the 3-D radiation and I had clean margins after surgery, but, I had one lymphnode that tested positive for cancer so IMRT was out. I also had the radiation to both sides of my face, from the middle of my cheeks down to my armpits. I only had boost treatments to my left side, the side that had cancer. They were able to have the radiation beam avoid my salivary gland on the "good" side so I have a fair amount of saliva. Make sure to ask if that is possible in your case.
Take care,
Minnie

Hi Jen, I was very ignorant when given the treatment plan. I simply put my life on my doctors' hands without asking. Later I knew the radiation was the traditional one and questioned my oncologist why I wasn't treated with IMRT, a method that has fewer side effects. He only said I was not a suitable candidate due a very extensive area of tumors and at my time, this method was not yet widely used in Hong Kong hospitals and the success rate was still in doubt. So far, other than the mouth dryness, I didn't regret receiving the traditional radiation because at least it worked effectively to kill the cancer cells. That is the most important. You can do more research on this but I agree with Sheldon that the oncologist may be offering you an appropriate option already.

Karen.

I haven't been fully staged yet. One tumor thus far on supraglottis, but the PET and CT scans are tomorrow. Tuesday, I have a surgery date where they knock me out and completely scope and put in the PEG. Since chemo and radiation are already scheduled to begin on the 24th, I may well be too late in asking the question.

I know zilch about this. I'm already dreading the CT and PET scans tomorrow, not because of the procedure, but my arms are already pretty buggered up from the needles today. I think my veins are going to crap out and it's only the beginning.

Thanks for your answers.

Jen

Jen,

When I was being treated, IMRT wasn't even available, and I'm not sure I would have been a candidate for it anyway since my tumor was poorly differentiated. While I've had some ongoing reduction in saliva and some increased sensitivity in my mouth tissues as a result of the area covered by radiation, I think it's been a small price to pay in the long run. I still have some salivary glands that function moderately well, and I've learned how to make up some of the difference with Salagen, Biotene products, water and sugarless gum.

I had my annual followup visit with my radiation oncologist yesterday, and he told me that he and some colleagues are completing a study focusing on a group of patients who were treated around the same time I was. He said their findings tend to reinforce the premise that the best long-term survival results occur in cases where the cancer is treated aggressively at the first opportunity.

Cathy

Jen,

I had 2 positive nodes and they didn't even bother with the CT simulation, they used x-ray to set me up. This was at MSKCC. The fact that you are at a Cancer Center and, additionally, they seemed to have the appropriate answer about the IMRT should make you more comfortable. The CT. simulation would make me think that they will be doing 3D, which is the middle of the technological scale. Please be careful. Do not to let the fear of side effects cloud you judgment here. I had full blown radiation to both sides and the center of my neck, and I still have enough saliva so I don't need a bottle of water attached to my hand. You need to place some trust in your doctors and you want to be aggressive. You do not want to travel this road again, it sucks!

Good luck,
Glenn

Not all are candidates for IMRT but if you are it can make a huge difference in the quality of life afterwards. I was a stage III/IV with a moderately well differentiated tumor that was 6cm x 3cm (hardly a small tumor) and after 3 weeks of IMRT it completely vanished. 3D conformal is an older technology. Although there were no signs of metastesis or node involvement, they radiated some of those areas as well as the left tonsil. I was very fortunate to have one of the highest rated radiation oncologists in the country.

If the needles are hurting you ask them to use pediatric needles (even for the blood draws). I don't remember them using a contrast agent with the CT's but I had a IV for the PET, it wasn't a big deal. It'll be a lot easier with some anti-anxiety meds plus the PET scan took a long time. You'll have to get used to the needles I'm afraid as it's par for the course, especially when you start chemo. Some "vamps" are better than others and you'll hardly even know you're being stuck.

I started my treatment Jan 28, 2003 and so far so good, no recurrences. Hopefully you will have the same outcome.

This is the type of post that causes confusion here. 2 inches under my comment that 3D is middle of the technological scale, it is pointed out that it is old technology. This could lead the newcomer to think that older is somehow not as good. I am undergoing 3D as we speak because it is the appropriate delivery method for my situation, like Sheldon, post operative. I walk right past the IMRT system knowing it is not for me. The long timers here know these systems, their good points and bad. Many times the posts here sell people pipe dreams of reduced side effects in spite of the obvious and, additionally, cause them to unnecessarily question the medical advice they are getting. Most people here that, as is the case with Jen, had nodal involvement did not get IMRT. I hope they don't use standard radiation, that stuff is almost 100 years old.

Glenn