Hi everyone,

Today I took my mother who is 70yr with SCC on right tongue to see the RO regarding her radiation treatments. It's been about 5 wks post surgery on her tongue. Had one tooth pulled about a wk ago. She is getting set up for her flouride treatments also.
It's been a very stressful day. My mother goes back this Friday to get fitted for the mask and do the CT (simulation).
which I thought they were going to do today.
One of my first questions for the RO was, what type of treatment is she going to have. He said, he is not sure at this point. He said he is leaning toward IMRT but he needs to talk with her ENT dr. again to discuss some more things with him. He was questioning whether she had perineural invasion. The patho report did not state that. So I don't know if this will be his deciding factor or not. Can anyone explain perineural invasion? I know it has something to do with your nerves. I think.
I was a little upset over his answer.
He said about 7-8 wks of treatment.
I guess I was expecting a plan in progress. She has had this appointment set up, why didn't he discuss it with him prior.
He explained both treatments. He said she is between a stage 1-2. We discussed her history. SCC in 1986 and 1988 with surgery. In 2003 dysplasia. And now it's back again.
I kind of understand the IMRT, but with the cancer coming back I thought conventional would be better.
Can anyone explain the difference and maybe how they determine which to use??
I asked about the Petscan and he said doing it prior to radiation would be no benefit. Her CT scan of neck came back normal but how do they know for sure that there is no microscopic cells in her lymph nodes.
Anyhow he was amazed at how well she was doing with the type of surgery she had done. (half of tongue removed with skin graft). She has lost about 12lbs just from that. But she is eating just about anything right now. She just has to take smaller bites.
One thing I forgot to mention was about the PEG tube. I got upset at first because he was unsure of the type of radiation that I just forgot. I did ask him many questions. I hope when she goes this friday for the mask fitting that he has decided on what type of radiation he is doing.
I'm not sure if we will even see him.
If anyone can help I would appreciate it.
Just wondering what anyones thoughts on my mothers treatment regarding IMRT or conventional radiation. I am no Dr. I just want them to treat this cancer aggressively so it does not return since it has come back.
I forgot to mention that my mother's father (my grandfather)which passed away before I was born had died of we think tonsil/throat cancer.
He was in his 60's and had radiation. This was 40plus yrs ago. He smoked a pipe and chewed tobacco. My mother has never smoked in her life.
So with a family history, they need to treat this aggressively,
Thanks for listening and would appreciate any help.
Take care

Michelle

Michelle, It's interesting you think there's a family history because my understanding is that with this cancer, there doesn't seem to be much relationship to genetics, but maybe there is and it just hasn't been found yet.

I can try to explain perineural invasion (because I had a small, barely Stage II in size, tumor which had it). My understanding is it is when the tumor is growing along or around a nerve. Cancer can spread through lymph fluid, the blood and (less commonly)via the nervous system so perineural invasion basically means there is another pathway by which cancer cells *may* have migrated elsewhere from the tumor which was removed. There has been some research showing it to be a significant risk factor for recurrence.

I had perineural invasion and had IMRT (and was told in my second opinion at a leading cancer center that IMRT would be a fine way to treat me, even with the perineural invasion), but for what it's worth (and I'm not a doctor just someone who's done some reading on this), I can see why someone might think conventional rad would be better with perineural invasion because in your mother's case, as in mine, the tumor is already gone so where they are targeting the radiation using IMRT would be the primary tumor bed and the known pathways by which the cancer would spread--and that means primarily lymphatic pathways I think--my impression is not enough is known about how cancer would spread along nerves to target neural pathways. But, again, I'm not a doctor and I could be wrong about this.

Anyway, I hope this helps.

Nelie

Michells,
The CT is for treatment planning. Simulation is done on the LINAC. So that may be why the treatment plan isn't solidified yet. 7-8 weeks seems excessive - most of us had 5 weeks or so (of radiation anyway.

IMRT has far fewer quality of life issues. It's the same amount od radiation, just highly targeted and tissue sparing. She may recover most of her salivary function and they can avoid thyroid damage to a large degree.

I had IMRT (I insisted on it) and I am doing great today. One word of caution - they had better be experienced with it, as in they use it all the time, and have a good track record (i.e., as in CCC).

Some RO's prefer XRT if the cancer has an unknown primary or is poorly differentiated. You need to grill them on the risk/benefit issues of both types.

She will probably need a PEG regardless of what radiation she gets.

Oral cancer is not passed genetically so family history shouldn't be a factor. If she was exposed to second hand smoke - that could be a familial environmental factor.

Here's a link to PNI:

http://www.findarticles.com/p/articles/mi_m0BUM/is_12_83/ai_n8704905

The Linear Accellerator (LINAC) with which she will receive her simulation on and her treatments as well. It is an intimidating monstrous machine.
But whether she recieves the newer IMRT (Intensity Modulated Radiation Therapy) or the standard external beam (with blocks) radiation she still needs to either consult with a Gastoenterologist about PEG and have this doctor standing ready OR go ahead and have the procedure (PEG) . As Gary stated, she will need a PEG to insure proper nutrition. PEG (percutaneous endoscopic gastrostomy).
Darrell

Nelie, Gary and Darrell,
Thank you for all the information. We just got back from the RO. My mother got fitted for the mask today. We met with the RO first.
What happened was my mom was scheduled today but they called this am to tell us they could not fit her today because they did not have the size bite block they need for her (pediatric size)to set her up for the IMRT. I called them myself and was asking more questions.I said the RO told us that he was not sure of which treatment at this point. So are they going to do IMRT? She spoke to the dr. and he had us come back in to see him.
So we sat down with him and he then went on to tell me they do use IMRT but my mom would be the first person that he would be using IMRT for a head and neck cancer pt. This really scared me to hear that.
The hospital that we are using is one of the CCC center locations. The RO we are seeing said he worked at the CCC that is affiliated with this one. The main center is about 1 hr away.
At that point he said he has been doing a lot of thinking and research and he was possibly thinking of using IMRT on my mother if he was going to radiated both sides of neck and mouth on her. The reason being that it would spare the main salivary glands. He said he was leaning toward just doing conventional radation on her and treating only the right side of her mouth and neck. He said with no lymph node involvement that she has about 40-50% chance of microscopic cancer cells on right side (the side of the cancer on her tongue). So he would for sure radiated the right side of neck. If she did have lymph node involvement then she has about 80% chance of it being on other side as well.
I remember what Gary said, they had better be experienced with IMRT and to find out they have not used it on any other head and neck CA pt, I was a little worried of them experimenting on my mother.
The finial decision we came to was that she will be having conventional radiation on right side of neck and tongue.
He explained how brutal radiation can be on a 70yr old regardless of how healthy she is.
He said if this was the first time she had cancer he would even question doing radiation, because they did surgery, clean margins, no lymph node involvement stage 1-2 and according to guidelines she would not need radiation. But since she had it 15plus yrs ago she definetly needs radiaiton this time.
That is where we stand at this point. She will start radiation next week. We talked about Peg tube and he said she would probably not need one.

Any thoughts or suggestions would be appreciated.
Nelie did you have radiation on both sides of your tongue and neck?

Thanks again
Michelle

Hello Michelle, I am a little surprised that he said that radiation can be tough on a 70 year old and does not thing that a peg would not be needed. Any radiation in the mouth, neck area is bound to be tough on the salva glands, taste buds and could have some issues with swallowing. Why not have the PEG tube as kind of an insurance policy, At times I hated it but was damn glad that I had it and for the most part my PEG tube was very NON-invasive and I barely knew that it was there. Do her ENT DR., Oncologist and Radiologist all agree that a Peg is not needed?
always Lenny

MICHELLE, I ECHO LENNY'S QUESTIONS. The peg can be a lifesaver to someone undergoing radiation. Radiation is tough on everyone. Why take a chance at her age? Ask some more questions of other Docs involved. If it were me, I would insist on a peg, knowing what I know now. Amy

Michelle I traveled 60 miles each in SF Bay area rush hour traffic(some of the worst in the US) to be treated at an experienced CCC. 3+ years later I am still alive tip tell about it.

I would be nervous about the RO's response and level of experience as well.

Michelle, I had radiation on both sides. But there was some disagreement about whether I needed that. The opinion I got from Dana Farber was that I did. My ENT here thought that I did.

But, like your mother, I was being treated at a new CCC satellite location at the hospital in my town (the CCC being Roswell Park which is 3 hours away from here and the closest CCC to here even so, so a satellite facility was sorely needed). The RO treating me, who was from Roswell Park (Much like your RO) only wanted to radiate one side of my neck. My understanding is this was a radiation plan agreed on by all the ROs at Roswell Park--that they all review the treatment plan for any radiation patient. I was confused about why they thought this would be OK when I had another expert opinion, and my local ENT, whose judgement I also trusted, saying they really needed to radaite both. So I contacted teh RO from Dana Farber again and he very *clearly* told me I needed radiation on both sides because my tumor was close enough to the midline for there to be a risk (but I also had perineural invasion and that might have been a factor too--I'm not really sure about all the reasons why he thought this, just that he was pretty sure of it). Apparently he contacted the Chief RO at Roswell Park and he talked to my RO here and all of a sudden they were agreeing to radiate both sides of the neck. What I *DIDN'T* ask, and should have, was whether my RO here hads ever done a head and neck IMRT plan although I think he definitely had--when he talked to me about what the radiation would be like he sounded like he'd seen lots of patients go through it--but maybe that was non_IMRT radaition he had seen.

I do have some regrets about not going with the original one side of the neck plan OR going elsewhere for treatment. I can barely swallow, 10 months out after radaition because the IMRT apparently caused strictures in my espophagus which I was told by a speech pathologist with expertise at treating swallowing problems caused by head and neck cancer treatments, could be prevented if the radiation oncologist "knows how to tell the IMRT to avoid the esophagus". (She made clear this doesn't happen with non-IMRT radaition, it's an effect of less than expertly done IMRT). It also took me 6 months longer than it should have to even find out I HAVE strictures because I was given a modified barium swallow locally where both the speech pathologist and the radiologist here totally missed seeing it (but it was there to see). Given all that, I would defintiely recommend your mother NOT be the first head and neck IMRT patient your RO works on. If the main center is an hour away, that is a managable distance and probably worth the trip.

Nelie

Michelle, four years ago I was the first head and neck patient to get IMRT from a very dedicated team. As the first one, I got extra special attention and care. The RO was very experienced so I was not worried. My treatment plan, explained to me in detail, was contained in a notebook three inches thick. There was never any question that I would receive radiation on both sides. The treatment, which included chemo, was not fun, but apparently was effective as I am here and very well today. Furthermore, because of the careful use of IMRT, I have salivary function that approaches pre-treatment levels and is more than adequate. In my case, being first was an advantage, but whether or not you choose that route, I stongly urge you to consider rad to both sides.

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