Hello everyone,
Thank you all for your responses. All of your responses have given me so much to think about.
I have been so overwhelmed these past few days about what is the best treatment for my mother.

I don't know all of your ages, but my mother is 70yrs old. We have to take into consideration her age and what radiation can do to someone of that age.
She is getting treatment at one of the CCC centers in our town. Getting treatment at the actual CCC is out of the question. The distance is to far for her to travel daily for radiation treatments.
I had some more questions for the RO so we called him today and we went to see him again to discuss my mother's treatment. We have met with him 3 times now. We had no problem getting in to see him. I am very confident that he is a good RO. He actually worked at the main CCC a few years ago. He specializes in head/neck cancer.
We talked again about the IMRT treatment verses the conventional radiation. We discussed the benefits and risks just as Gary suggested.
Again he said she is a stage1-2. No lymph node involvement and clean margins with surgery. 1/2 of tongue removed.
He was only considering the IMRT if he was going to radiated both sides. He spoke with her ENT dr. and they both decided that she needs only the right side treated. He said IMRT is not for everyone. He felt if he was to do the IMRT that my mother would not be able to handle the full treatment and if he had to stop treatment because of the side effects than that would be no benefit to her. One of the main factors was her age and the quality of life she would have. He did not directly say that but that was what I felt he was expressing. If she did have lymph node involvement than the IMRT would be the treatment planned.
She had SCC back in 1986 and 1988 and had been fine until now. Each of the 3 times this has occured the patho report stated moderately well differentiated SCC. Which is the better one to have he said. The gap from 1986 and 1988 until now is about 17 years. When she had it in 1986 and 1988 she just had surgery. Now she is having radiation. Hopefully this will take care of it.
At this point they got all the cancer out with surgery. The microscopic cell are what we are dealing with now.

So we are set up to begin radiation this Thursday with the dry run on wednesday.
Deciding on the treatment process is very stressful and overwhelming. I am beginning to see what all of you have gone through.
I commend you all for the strength and courage that you all have shown. That is where I have gained some of my strength through all of your support and kind words. I thank you all very much.
Nelie I do hope your swallowing issues gets resolved. I have been thinking a lot about you lately.
I wish you all the best.
I will keep you undated as our journey begins. Anymore thoughts or suggestions are always appreciated.
My thoughts and prayers are with you all.

Michelle

Michelle, we will all hope for the very best for your Mom. The radiation will probably be hard on the both of you. If you are her primary caregiver, you will really need to take care of yourself, STARTING NOW. Rest when you can, eat right, take vitamins, exercise, just find time somewhere to rejuvinate yourself. Keep us up to date on how you both are doing. Amy

Michelle, Today is the one year anniversary of the day I started my radiation and chemo. I will be thinking of you and your mom as you go through this--and please don't be shy about coming in here to vent or ask questions as needed!

Nelie

Michelle,
you need to understand that "CCC" refers to 17 specific treatment centers around the country that are linked together and provide the cutting edge of cancer treatment. They also have all of the state of the art equipment and clinical trials.

Most persons (including myself) have had bilateral radiation (both sides of the neck). They don't typically use as much radiation in the "good" side. If they use XRT just about everything is irradiated anyway and most likely she will lose all salivary function (permanently) and have other quality of life issues.

They were also able to spare my thyroid, which is easily damaged with radiation. The amount of radiation they would give (I'm guessing 72 cGy) will be the same either way.

Your RO's statement "if he had to stop treatment because of the side effects than that would be no benefit to her" is confusing to me -it has always been my understanding that IMRT is better tolerated by most patients. IMRT is a tissue sparing technology where as XRT does a lot more damage. All radiation has side effects.

Michelle,

I had a Stage II tumor with no evidence of lymph node involvement; however, my tumor was poorly-differentiated, which was probably a factor in the planning of my radiation treatment. I had no options other than conventional radiation, as IMRT wasn't available in 1989. While I had a tough time getting through it and for several months afterward, I don't think my experience was any worse than many of the people here who have had IMRT -- in fact, I think it was better than some. Although it was extremely difficult, I did keep eating entirely by mouth all the way through treatment (I was never offered a PEG), and only lost about 12-15 pounds. At that time there was nothing that could be done from a preventive standpoint to preserve salivary function, but I have still regained quite a bit of it through a combination of medication, good oral hygiene, and normal healing. I long ago got back to the point where I can eat virtually anything I want to, and I can't say I have ANY residual quality of life issues related to XRT.

My point is that you can gather a great deal of information about different people's experiences with radiation, but as one of the recent commercials goes: "you can't predict, you can prepare". I think the key is to be sure her medical team is convinced about (and has explained to you) the reasons for their choice of treatment. Beyond that, try to stay focused on her nutrition and hydration every single day, and watch for any early signs of infection so they can be dealt with immediately.

Cathy

Amy, Nelie, Gary and Cathy,
Thank you for your responses.

Things have changed for my mother since yesterday.
She got a phone call from her RO to come in earlier today. She was planning on having them do what I think they call the dry run, day before treatment starts. Instead they fitted her for another mask. They are setting her up for the IMRT. The RO is going to call her tomorrow and talk to her. He was in surgery today so she did not get to speak directly to him. He is planning on calling her on Thurs. to talk to her.
Anyhow she won't start for 2 more weeks because they send everything up to the main CCC in Cleveland to have things checked or set up (I'm not quite sure). I think they do the initial set up.
I don't know what changed his mind about the treatment. I will find out tomorrow.
I don't know if they can just treat one side with IMRT or how that works. Or if he is going to do both sides or what. Gary or Nelie do you know about the IMRT if you can treat just one side or is it set up to do both sides. I am confused about this. I don't know much about IMRT.
Does anybody know when they do IMRT can they just treat one side, or does it treat your entire mouth and both sides of neck???
Cathy, I am glad to hear you are doing so well. That is great. Did you have both sides of your tongue and neck treated? Or did they just do one side???
I have read so many people's stories about radiation on this website. It gets to be overwhelming at times.
I am not sure why they are deciding to do IMRT now. I remember the first visit with the RO he talked about doing IMRT on my mother but was undecided at that first visit.
I don't really know which one is best for her. That is for the DR.'s to decide.
I just hope that the IMRT has less side effects.

Amy I see that you are a caregiver. Was it your husband who had SCC? Where was his cancer??I see that he had IMRT also. Any lymph node involvement? And did he have both sides of neck treated with IMRT?
Sorry for all the questions. I am just trying to learn more about IMRT.
I will keep you all updated.
Any information is greatly appreciated.
Michelle

hello again Michelle,
I had IMRT and it did cover both sides of my neck however a majority of the radiation was directed on the side of my primary site and the one lymph node that was involved. IMRT seems to be the prefered treatment that spares much of the surrounding tissues like taste buds and saliva glands, even though these things can be effected by IMRT Ihave been told that it is minimal as compared to general radiation. I still had some issues with taste and saliva but I do not think that they are permanent. I finished my radiation on DEC. 16 of last year (2005) and I have about 80% of my taste back and about 50% of my saliva and I am sure that it is going to get better. My cancer was in my right tonsil and had spread to 1 lymph node, I know that your moms is different so her field of radiation will be different than mine the main reason for using IMRT is to focus the radiation in a very concentrated area and to minimze radiation to non cancerous areas, thus lessening side effects and potential quality of life issues down the road. I for one am glad that i had IMRT and although I am not 100% sure I think that the side effects issues will continue to improve. Although I am sometimes impatient I must always remind my self that all of this stuff is not 6 months behind me yet.
Michelle I hope that this answers some small part of your questions and I am sorry for just rambling on. Good luck my dear, your mom is lucky to have you in her corner, now come out swinging. always lenny

Michelle, I am caregiver to John[my husband] his 1st surgery was Apr 21st,05.Part of the floor of his nouth and tongue were removed and he had a bilateral neck dissection. Afterward he had 30 IMRT treatments, both sides, ending last July. He was beginning to improve until Nov. when he started having real difficulty again. It has turned out that the cancer is back. His 2nd surgery was Feb.9th of this yr. and chemo will begin shortly. He has a peg and all of his nutrition comes from it.John is 63 and is a very tough person [not a complainer], but this has been a really mindblowing battle. As a caregiver, I have to urge you again to find ways to take care of yourself. You won't be any good to your Mom if you are worn down. Amy

Michelle, I had both sides of my mouth, tongue and neck radiated. I think they directed a little less radiation at the neck, especially the opposite side from where the tumor was (I think this because I got radiation burn on the left side before the right, I can't recall if they told me, my RO was not very forthcoming about specifics about my radiation plan), but they radiated it all.

I assume IMRT could be used for one or both sides since the whole point about it is it can be directed to more targeted areas than XRT.

I'm glad your mother is getting IMRT and that the main CCC is doing the radiation plan.

Nelie
Nelie