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.