Hi my name is Robin and JC is my husband - we just got married yesterday. anyhow, JC underwent surgery about 3 weeks ago and had his lymph nodes and right tonsil removed, they cant find the primary so we went to see the fry dr. (the radiation guy) and he scared the heck out of us, so we were considering NOT doing it at all (....enter JoAnna who told us about this website and an angel from above) i guess what we are looking for is info on the radiation (IMRT) side effects, what to expect and so forth. we both work at the Oregon Food Bank - im in the warehouse and he is a statewide truck driver - we want a long and happy life together doing what we both love to do at the food bank!

I am just finishing IMRT therapy this week and my experience was similar to Joanna's. I have some burns but I think that they'll heal quickly once the radiation has stopped. The difference between IMRT and conventional XRT is like using sniper bullets vs. a shotgun. They can program the IMRT to vary the dose rates through certain tissues and save most of the salivary function. You'll get the same amount of radiation, just more precisely targeted. I am positive that IMRT will be the "standard of care" and most radiation treatment centers are adding it. I understand that UCSF has a 70% success rate and they have been using it there since 1995. If you type in "IMRT" on Google, you will find a wealth of information about it. I also didn't need a PEG tube, but that is a personal choice that only you and your doctor can make.

Congrats Robin & JC on your marriage...welcome to the boards. There is a wealth of knowledge on these boards and a great group of people to support you.

You can use the search of the message boards and find specific information (IMRT) on any questions you might have, also the sitemap will take you to all the wonders on this site. It is so much information it's almost overwhelming all at once. But stick to specific answers you need at first and the information will be invaluable to you as you go through this with your doctors.

No one can tell you what to do or not to do, but in my opinion only. "Nothing" is the worst possible thing you can do if you guys want a long and happy life together.

There are many poeple here, both patients and caregivers, that will be here for you every step of the way if you need us. We have either been there, or are going through treatment right now.

Please read and learn about the options available and keep us posted.

Take care,
Dinah

"Borrowed these directions from another one of Brian's posts. He describes finding things better than I do" Thanks Brian - hope you don't mind.


Here is one link in the site for IMRT radiation http://www.oralcancerfoundation.org/facts/imrt_radiation.htm

But you can always go to the word “search” on the bottom of all of the navigation bars and type in words that you want the site's search engine to find in the site for you… in this case I typed in IMRT. You can also clink on "site map" on all of these same navigational pages, and you will see a complete list of page links of everything that is currently in the site. Lastly, the search engine for the message board is a stand alone feature. If you want to search the hundreds of postings on the message board for something, the word search appears under the message boards title on the first page of the message board.


Dinah

Your discussion about IMRT vs. "regular" radiation made me curious and I emailed my Rad. Onc. and asked him what kind of radiation treatment I had. His one word answer was "regular". I cannot help but wonder: If M.D.Anderson is the top cancer hospital in America and IMRT is clearly superior, then why was I treated with "regular" radiation?
Is it really that clear that IMRT is better? Is a different protocol used depending upon what stage one is in and how far the cancer has spread to lymph nodes?

Danny G.

While IMRT is being used at MDACC it is not being used on every oral cancer patient. The experience with this technology in brain and other cancers is fairly extensive, in oral cancer much less. In my discussions with the MDACC radiology head, they, like many other institutions are beginning to use it in a limited manner to evaluate its effectiveness in oral cancers. This means that some will get it others not. Remember that there is the whole other issue of how extensive a cancer is, and that will influence the choice as well. Obviously missing the salivary glands is beneficial to oral caner patients, but missing them, or other structures which may contain malignant cells (in too few a number to show up on the scans) would be a disservice. I had dandelions in my yard.... I started taking them out with a little trowel, and for a week or so it would look good. But then the dandelions seeds (which I could not see while I was selectively cutting the visible ones out) started to sprout and the damn things starting sprouting up in even greater numbers. Clumps even. So I got out a shovel. That seemed to do the trick... If it had spread more I would have spread the whole area with weed killer, or driven up in a backhoe to dig it all out and start again. Treatment is kind of like this. If you catch the weeds early before the go to seed, a spoon works well. If there is any doubt, you need to do something that will eradicate the bastards from the whole lawn. Bring on the big guns...

WOW!! what a treasure chest of information, not to mention the encouragement and support that we both need right now. We have gone from "no way Jose" to "lets do it!!" - so the mask will be made at the end of the month. It seems as though the fears we have had are fading, and for that we are grateful to all!! JC has an appointment at the cancer care resource center tomorrow for more information and guidence. The more information we get seems to calm our fears and frustrations of not knowing what the heck is going on. Any comments on the PEG tube for feeding? We seem to be leaning toward it, as his tonsil removal hurt his throat more than the neck dissection, and he was not too happy with the soft foods he had to eat durning that time. I dont want to become the "nagging" wife right out of the gate during all of this. (go figure!!)

The PEG tube will most likely become a necessity, not a choice, if you have conventional radiation treatments. While some have toughed it out without one, in my personal opinion, the nutritional loss and the pain associated with trying to eat normal food when my mouth and throat were full of mucocitis sores from getting nuked just wasn

I also had an unknown primary and the problem with that is they do not know what to eradiate so they 'fry' everything. My field of radiation was from the top of my ear lobes to my armpits. Make sure they do something to protect your saliva glands and tongue.

I made it through my 37 treatments of normal radiation without a PEG and would NOT recommend getting one if you can swallow normally before you start radiation. Yes, you will living on Ensure Plus or some other high protein swill, but pouring it in through your stomach doesn't taste any better. Bulk up before hand. I keep reading on this forum of problems, like severe trismus and swallowing not to mention stomach muscle pain, of the people who have had the PEG and wonder why they opted for this until they absolutely needed it. I also know lots of other people who get through radiation without the PEG and didn't lose a significant amount of weight. I think it depends on what other surgery to the mouth one had before they started radiation. I'd take and wait and see approach.

The one thing to remember, which I was loath to find out when I developed cancer of the larynx 4 years later, is you can only have radiation to an area once. I would find out just how broad an area they intend to radiate. I suspect it will be very large as mine was.

Good luck. You CAN and WILL get through this.

Eileen makes some good points, but I think that she is mistaken in stating that the majority of posters had problems with PEG feeding. She mentions trismus as a problem, but that is related to scar tissue formation and radiation, and has nothing to do with whether or not you choose to have a PEG tube put in. Ditto swallowing problems, again not related to a PEG tube. Occasionally someone has a tube come out, or develops a minor infection around it from not applying antibiotic ointment on it regularly or not keeping it clean. But the problems in comparison to poor hydration or poor nutrition are minor in nature. As to your ability to swallow before treatment, I am not sure what she is referring to. But using myself as an example, I was eating pretty much anything until the third week of radiation. At that point in time, the sores from mucocitis, and the raw tissue in my mouth and throat made me not want to eat anything by mouth. Couple that with the fact that if I did choose to eat something (when I wasn