Correction. I should have said I don't have the surgical report in front of me. I obviously did have the path report! Just trying to make myself look like a genius quoting all those figures off the top of my head! Ha!

Rosemary:

I am going to QUICKLY jump on one thing that leaps out at me from your post then will review the rest and respond later. It is ESSENTIAL in late stage cancers to radiate both sides of the neck down to the level of the clavicle!!In fact, even in earlier stage oral cancers involving one side of the neck (like in Dave's case), radiation to both sides is standard protocal.

In fact, most survivors and radiation oncologists will tell you that it is recommended because the highest incidence of re-occurence is local (the original area and the other side of the mouth/neck).

Please, Please, Please check again-I am hoping Brian will weigh in with his opinion but the research I have done and the oncologists
( surgical, radiation, & medical) all agreed(I swear the one thing they did agree on!) that bilateral treatment is key.

You are very fortunate Heather does not have involvement of the nodes on both sides of her neck becaue it is likely she would have both sides surgically treated. But, I just want to reiterate again that bilateral involvement is NOT the only criteria for radiating both sides of the neck. Duel to the end with the big boys on this issue!I hope I'm not scaring you but reinforcing the healthy caution most of us now have about advice being given-I'll write more later. A tough and competing issue this trust thing though though-because we also all know we have chosen to put our lives in the hands of these folks.

Great news on the scans!

Will be back with more later.

Kim

Hi.....this is more of a question, Kim or whomever. My husband for those who don't know had stage 4 tonsil cancer, it was inside his tonsil growing into his neck,(tonsillar pillar) they called it I think, he had 3 involved nodes. All the panel agreed to the chemo and radiation...adjuvant therapy I think they called it.He was told if he had to stop radiation for whatever reason, chemo would stop too. It wasn't so the chemo would get any cancer cells that left the area, but to help weaken the cells that are being radiated so the radiation would be more effective. If I remember right they said it made the radiation 10x's more effective.
I guess I am just curious why some doctors chose to go for adjuvant and some do not. I know everyones case is different, but there are some people that have had the same type cancer etc and get totally different treatments.
Thanks, just asking, I have a hard time giving an opinion when so many doctors don't even agree.
Sherrie

Sherrie,
Your husband's cancer sounds almost just like my husbands. He had a tumor in the very center of his tonsil, was not visible, and it had spread to three lymph nodes. They said his was his tonsillar fossa, though. We went to MD Anderson and after meeting with the board, they decided not to do chemo, just radiation to both sides. I don't know why some do it and some don't. I think I might have felt a little better if they had done chemo, of course I would probably still get the nerves that come every time we go back for a checkup.
Julie

Kim,
Thanks for the info on the bilateral RAD.

Brian,
Could I ask your opinion on that please? Is it essential for Heather to have both sides of her neck irradiated?
If she can tolerate it, how well does the amiphostine protect the salivary glands? I know survival is the first concern, but the xerostomia is a HUGE issue in her mind. The RAD onc. is setting up for just one side of her neck and to change it now might delay the treatments even more.
I just read an article on the importance of having the total treatment time (from surgery to the end of RAD) be less than 100 days. She already will be going over that time. Her surgery was Sept 4th. Her diagnosis to surgery time was quite short, however, if that makes any difference. She had the surgery 2 weeks after they got the biopsy results.
Also, I am still a little confused on the Stage. The surgeon said Stage 4 because more than 1 node is involved. The path report says T2N1MX, which looks more like Stage 3. Now that the chest scan is negative, I assume that means it is now M0. But, broken down further, I think her status would be T2N2bM0. I'm thinking the variance is because although she had 4 nodes involved, the largest was only 1.2 cm. I've read that the staging partly focuses on node size and any under 3cm or even 6 cm is not as bad. Is that correct or just misleading? Does that make a difference in choosing RAD/chemo or just RAD?

Still terribly confused. I wish I had found this site earlier. I feel a terrible mistake has been made by not starting RAD weeks ago.

Thanks,

Rosemary

Kim,
Thanks for the info on the bilateral RAD.

Brian,
Could I ask your opinion on that please? Is it essential for Heather to have both sides of her neck irradiated?
If she can tolerate it, how well does the amiphostine protect the salivary glands? I know survival is the first concern, but the xerostomia is a HUGE issue in her mind. The RAD onc. is setting up for just one side of her neck and to change it now might delay the treatments even more.
I just read an article on the importance of having the total treatment time (from surgery to the end of RAD) be less than 100 days. She already will be going over that time. Her surgery was Sept 4th. Her diagnosis to surgery time was quite short, however, if that makes any difference. She had the surgery 2 weeks after they got the biopsy results.
Also, I am still a little confused on the Stage. The surgeon said Stage 4 because more than 1 node is involved. The path report says T2N1MX, which looks more like Stage 3. Now that the chest scan is negative, I assume that means it is now M0. But, broken down further, I think her status would be T2N2bM0. I'm thinking the variance is because although she had 4 nodes involved, the largest was only 1.2 cm. I've read that the staging partly focuses on node size and any under 3cm or even 6 cm is not as bad. Is that correct or just misleading? Does that make a difference in choosing RAD/chemo or just RAD?

Still terribly confused. I wish I had found this site earlier. I feel a terrible mistake has been made by not starting RAD weeks ago.

Thanks,

Rosemary
vidwiz2000@earthlink.net

First I wish to apologize for the tone of my last post. I won't bore you with the details, but my passion for getting people treated promptly and correctly frequently supercedes my decorum and tactfulness.

I can not imagine that the radiation oncologist would choose to do only one side, unless pressured to do so, and even then most would buck any kind of pressure to deviate from proven protocols. kcdc's post says it all again

Rosemary,

As I have mentioned before I now have mets to the liver and bones...when they did radiation they only did one side. My doctor (ENT)told me when I asked why I wouldn't get it on the other side, quote: "that just doesn't happen". Neither he nor the radiation oncologist even mentioned doing both sides.
My excuse at the time is that things were happening so fast - we put our trust in these docs.
Does it have anything to do with now a year later ? I don't know. And I'm not in the medical community as a profession, but I can tell you if I had it to do over. I would have insisted...Rosemary I've been on this board only since July...but Brian hasn't been wrong yet and he's who lead me to a doctor for my liver.
Good luck and I'm sure you can convince your daughter dry mouth is not the priority here. Living is.
Take care,
Dinah