Nelie,

I'm glad to hear that some of the treatment issues are getting resolved in a way that gives you more confidence -- particularly the point about radiating both sides of the neck.

Please continue to keep us posted on how you're doing.

Cathy

Oh I will, Cathy! I'm sure I'll have lots of questions and will probably do my share of whining too. Now that everyone is on the same page (Dana Farber's page, which is what works for me) about what is going to happen, I am starting to wonder again how I'll hold up through all this. I am really glad this place is here.

I've been going to a breast cancer support group here and I'm getting the feeling that I'm giving some of the other women there a good basis for downward comparisons and making them feel a lot better. All of a sudden their treatment doesn't look so bad when I start talking about the things I can expect during radiation on the mouth. I'm glad it's making them feel better, but it's so nice to know this place exists and I'm in the company of people who have made it through the same treatment I'm getting.

Nelie,

I apologize for getting back to you so late. I just had those few minutes this week to pop on and send you the private messages.

I, like Cathy, had my tumor excised with clean margins. Yes, rads can be used to shrink tumors before using other treatments. It's also used, as in my case, to get any cancer "dust" as the docs referred to it.

I hope this helps.

Sabrina

yes, thanks Sabrina. I didn't realize it was used that way too. I think with IMRT they can do kind of the same thing and focus more of the radiation on the site where the tumor was using that. I really appreciated your messages too. I hope you'll check in and give me some encouragement as I go through this....

I met the gastroenterologist who will put in my PEG tube today. I'm not looking forward to that but they said at D-F that it was really necessary if I was doing rad. and chemo so, like getting the theeth puled, it's somwthing I just have to get through (spot where they drilled the roots of that one tooth is really nhirting today too)

Andrea, I found this and thought I'd bring it back to the top for you to read since part of it deals with the same issues about whether the right side of the neck needs radiation.

nelie

Oh yeah, rereading this brings up another question for you, Andrea. When are you having your teeth pulled? Has that happened already? because it has to happen before they do the sim (and my RO wanted it a week before the sim because the gum swelling needed to go down).

I know all this must be completely stressing you out right now. Hang in there. Nelie

Thanks, Nelie.
Sounds like I have some talking to do to the docs!
If they're going to do it at all, seems like they need to do it right!
Andrea

Andrea,

I really think you need to talk to the folks at Dana Farber central no matter what. This just runs so contrary to the advice they gave me (that both sides of the neck absolutely needed rad and IMRT would be used to spare the parotid) that I think you really should go to them directly for a second opinion. I assume when you said somewhere that "the board" had decided on the one-side of hte neck thing that that board was a local tumor board not anyone from DF in Boston?

I mean, the RO of the head and neck team in Boston wase willing to call the chief RO at another CCC to argue this needed to be done in my case so it seemed like it was something they feel pretty strongly about. I realize I had a couple of risk factors you may not have but I think we were/are probably equally at risk for having cancer cells in the opposite side of the neck. And I know it isn't a huge risk at all but do you want ANY risk of developing a more advanced cancer in the other side of your neck after going through this?

if you are going to get rad. done, you might as well do it right. And if they use IMRT they can do it right and still spare most of your salivary glands.

fwiw, though, wihtout the risk factors I can see why they are not recommending the chemo.

Good luck. Its hard challenging the authorities, even harder going above their heads to get somehting done right but rememebr this is YOUR life and your future, not theirs.

Nelie