Hi all! My sister has her first radiation consultation this Friday that I'll be taking her to. I was wondering what we might expect? She had surgery to remove the parotid gland (the salivary gland in front of your ear) three weeks ago. Negative margins and one lymph node involved. Currently has nerve damage on that side of her face and is very depressed. She's also very thin (about5'7" and 118 lbs.). She's having pain in her jaw and says she is eating very little so I'm very worried about the upcoming treatments. I encouraged her to get a dental appt. but she hasn't done that yet. Her doctor didn't say a word about that. Anyway, any insight on what to expect Friday would be much appreciated!

Hi Robin, The first visit will involve discussing the whole plan, mapping the treatment area, possibly fitting the device that holds her head in position in the machine. There should not be anything that hurts (unless they draw blood) In fact radiation treatments are painless. It is the after effects of radiation that cause some pain and the other difficulties.

What side effects she will have, will depend upon how wide an area is treated. If she is able to have IMRT, then side effects are minimized. If her teeth and jaw are in the radiation field her doctor should advise her about the effect on teeth and bone. Many people are told they will need teeth removed. This is not correct. Teeth that are in good shape and in a healthy mouth do NOT always need to be removed!

Thanks Mark! When I reread my post, I realized I'd meant to say she had positive margins. The doctor never told her what stage and I encouraged her to find out - but I think she doesn't want to know. I had read about teeth being removed and I was praying that wouldn't be suggested. She's 46 and already depressed about the paralysis of her face. That would put her over the edge, I'm afraid. I need to do more reading as I have no idea what IMRT is. (I'm clueless about all this stuff!) I'll do some web searches. Thanks again!

Hi Robin. That is my daughters name by the way.

IMRT is narrow bean radiation. It damages less area as it is more capable of directly hitting the spot where the cancer is.

The simulation and mask will take a while and may cause her some pain. They told me I could take a pain med before I came or a tranquilizer whichever I preferred.

The mask is mesh now and it not as bad to make as the old kind. Mine dried in less than 5 minutes so I worried over nothing.

As for the teeth I wear denture so have no clue. There will be some side effects of course but there are meds for everything to either stop them or make them bareable. I believe side effects vary with each person.

May God go with your sister and your family,
Barbara~

She definitely needs to have a dental consult before starting radiation. At the very least she should have her teeth cleaned, a full mouth x-ray and any repairs made now. She should also be fitted for dental trays for in home flouride treatments. Like Mark, I agree that pulling teeth is often unneccessary (I kept all of mine). But meticulous dental care before, during and after treamnet is an absolute neccesity.

It is reckless and irresponsible of the radiation oncologist to not have REQUIRED this prior to radiation. I would be looking for another place to have treatment - preferably at a comprehensive cancer ceanter where they know what they are doing.

Dental complications can be quite severe.

See: http://www.oralcancerfoundation.org/dental/dental-complications.htm

Gary: Thanks for the info. Unfortunately - she has no medical insurance so we feel lucky that Memorial is even willing to treat her! Getting other opinions when you're destitute is pretty much out of the question. She said she'd call and make a dental appointment and I'm hoping she already did that. I'm also glad I'm going with her to this first appointment as I've learned a LOT here and will know some of the questions to ask. I'm never going to take my good health insurance for granted again after this experience!!! Thanks to all of you for the info!

Altho this site has saved my sanity[so far] during John's treatment, it has also caused me some major bouts of consternation. John's surgeon said" your teeth are not in that great shape so we will yank them during surgery" No dental referral before hand. He did leave 5 front uppers.
The rad people set up a dental appt for the floride tray after 2 1\2 wks of tx's. John's peg was inserted during the same surgery- no discussion- we were just told "he's gonna need it" By the way, surgeon was right. Rad dr. ordered 30 rounds of radiation- no discussion as to why that amount. Maybe in fairness to these guys- John did not want to be an active participant in discussions, and I did not feel right about asking questions thathe might not want to hear answers too. But, WoW, there seems to be alot of variations in the treatment arena. Not that I would wish this on a living soul, but it almost seems like one needs to go through this more than once to figure out what questions to ask.{ kinda like marrying someone} Amy

Amy,
About radiation: the standard treatment is 72 cGy delivered in fractions of about 2-2.5 cGy/day. The other option is to add a "boost" to it and they can do this for several reasons, poor response to treatment and/or advanced staging. This would add several more days to the treatment for a total dose of 81 cGy. 30 days would be a standard treatment protocol. 33-35 days would include the boost

Some RO's won't even irradiate unless a PEG is installed first.

If his teeth were in bad shape then they probably did the right thing but at a CCC you would have been refered to a dental oncologist and had a full mouth x-ray first. I got a second opinion from my dentist as well. I have always paid close attention to my dental hygiene.

I personally believe in being your own advocate but some persons do better in treatment just doing what they are told. Hence at times it seems like there are more caregivers on the forum than patients.

It's a tricky business. Once Dx'd they want to move quickly so many important decisions have to be made in short order. I had many sleepless nights while I researched all of my treatment options.

Robin, a full dental exam & cleaning should cost less than 200 bucks and is well worth it (dental trays are another $200 and necessary. Maybe there is a church that can give you the money from their benevolence fund.

Gary: I got my sister on the Colorado Indigent Care Program last year. This covers dental as well as medical for a small copayment. They are apparently covering her surgery and radiation but not doctor's bills. I advised her to make a dental appointment as I have no idea how long it takes to get in. She told me she can hardly open her mouth since the surgery but I told her how very important it is. Maybe the radiologists will talk to her about that tomorrow. I'm really concerned because her doc told her she should start radiation in three to four weeks but didn't act like there was any hurry. It's been three weeks and she's just now getting in for the first appointment. I really appreciate everyone's info and advice!