I have to post this quickly as I need to run back to the dentist today to get my trays made and see if the tooth-pulling/root drilling from last week has healed well enough for rad. next week but here are some of the many things coming up which I'm a little fearful of I thought people here might be able to tell me a little about.

1. what's the deal with the mask in radiation therapy? what kind of a mask? Is it uncomfortable? Can you breathe ok? Does it hurt if your skin gets sore? For some reason the idea scares me though I certainly understand why you have to stay perectly still.

2. I'm getting a PEG tube put in Friday--it's a bigger deal than I was hoping it would be--it sounds like one of those yucky surgeries where you hope you are sedated as much as they think you are (I wasn't when I had a colonoscopy 4 years ago and that experience was baaad). And there's an overnight in the hospital after I guess ebcause they want to make sure it's in OK and you have to be fed by IV for a while right after the insertion(?). They said it could be pretty painful for a few days after. How painful? That weekend is the last before rad. and I was hoping to visit with some friends and not be in pain all weekend--as I was this weekend from the dental work

3. Your teeth/gums after radiation. I know it's bad news if you have so much decay or damage that you'd need to have one pulled but what about fillings for small cavities? Do they require hyperbaric oxygen too? What about getting crowns/bridges? I hope I can get that done after for the two spots where I'm missing teeth now but are there risks with that as well??

OK, no more time to type the other questions but these are the three things on the top of my worry list this morning and I know I always deal better with things when I have some idea what to expect....

Nelie

Nelie
Can only answer one, the PEG the site will only be sore, and maybe a bit tender, no more than that. You'll be fine on this issue
Sunshine...love and hugs
Helen

Nelie,

I can't help much with your first two questions -- I think masks weren't generally in use when I had radiation, and I never had a PEG tube.

On your third point, your teeth and gums will definitely need extra attention for the rest of your life following radiation. I have routine cleanings every 2-3 months, and I see an oral surgeon or a periodontist (both of whom are very aware of my cancer history) for anything that might require more specialized work and additional caution. That said, I haven't had to have HBO for anything yet, and I've had a number of fillings, crowns, gum grafts, etc. in the past 15 years -- all with no complications.

Cathy

Thanks for the answer about the PEG Helen. That was helpful.

My dentist said he thinks I need two more weeks for the gums and bone to heal before radiation starts, not one. Actually, I think the rad. oncologist was thinking rad woud start the end of next week--so that's one and 1/2 weeks, making it two only adds half a week, gives me more time to get some things organized before then, and means the rbeast incision will almost definitely be healed enough to start with chemo on day 1 of radaition.

But I'm worried about delay because the whole thing with getting an initial opinion that I didn't need rad. and then also having the lumpectomy/ surgery to get clean margins in there added some time anyway. I seem to recall reading here somewhere about research on how much time is OK between surgery and beginning of rad. treatment--anyone know about it?

Still, I guess there's nothing I can do anyway at this point. Radiation before the gums and bone have healed from the dental surgery sounds like it would be bad news too.

Oh, and I rememebred my other big question. I'm going to be having Amifostine injections and I know I remember somewhere here postings about how Amifostine was hard to take. Why is that? Nausea? My medical oncologist mentioned some people have an allergic reaction to it--what sort of allergic reaction?

Hi Nellie, I will try to answer your questions in order:

1. The mask heeps your head and neck in precise alignment so that the radiation stays on target. With IMRT they want to be accurate to a millimeter. It is usually made of a thermoformed plastic mesh, molded to your face. It usually fits a little tight in the beginning but as you lose weight, becomes more comfortable. Also, since you will lose weight, there will be minimal pressure on the skin of the radiated area so you shouldn't suffer any pain. The mask is really not a big deal and you will get used to it quickly. It might help you to ask for some anti-anxiety meds, like Zanax as well, if you are really freaked out about this. I slept through many of my treatments.

2. I can't answer about the PEG I did it without one.

3. I kept all of my teeth. I wouldn't let them extract them. I would strongly recommend getting a second opinion about having any teeth pulled, especially since you are getting IMRT. If you keep your teeth first off they have to be in good shape going into this, secondly have repairs made now and dental trays made now. You will have to go the distance to maintain them under dry mouth conditions. Frequent flouride treatments, flossing, a Water Pik is helpful, get an extra soft babys tootbrush, Biotene tooth paste, mouth rinse an OraGel, etc. Check here for more info http://www.oralcancerfoundation.org/dental/dental-complications.htm

oops, when I wrote that last post I hadn't read yours, Cathy. I was interrupted by a call from the human resources office at work about all these forms I have to get all my doctors to fill out about how long I was out and why and how long I will be out and why. Since there hasn't been just one doc in charge of my case that's going to be complicated and I know there will be a week here and there where technically I could have worked but my chair and I both agreed that I shouldn't come in for one week here adn one week there and confuse all the students with a different teacher and expose myself to the flu. I hope they don't decide I don't get paid for those weeks now! Another thing to deal with.

Anyway, thanks, Cathy, for the answer about the teeth. My dentist who I saw this morning also said that fillings and bridges should be no problem, just major oral surgery would be.

Hi Nelie,
I had a horrible time with the mask when they made it and fit it. No one had explained the process to me and it was terrifying. I didn't like being restrained that way. So, realize that you will be very restrained and the first fitting takes alot longer then a regular treatment. After the first week of so of treatment I adjusted and found ways to deal with my anxiety and by the end of treatment I was like Gary, I could have fallen asleep!
Get a PEG if possible.
I had hyperbaric when I needed a tooth extracted and I had no issues at all.
Hope this helps,
Minnie

Yup, I'm getting a PEG Friday and, after meeting with the oncology nurse who will oversee the chemo part, I'm also getting a port put in during the same period of sedation/anesthesia on Friday. I have horribly inaccessible veins and I'm going to be getting an Amifostine injection every day of the radiation so a port will really help with that.

Between the PEG and the Port I'll be ready for whatever they want to put into me :rolleyes:

Just so long as they don't start putting in things to get it out of me--hopefully that I can handle on my own!

I think I'll be OK being restrained. I had a stereotactic biopsy for my breast and you have to stay very very still during that and I was fine. As long as they tell me what's going to happen before they do it, I can usually handle it.

Nelie, I had a peg for 6 months and never had any noticeable pain. The insertion was pretty easy, just a little uncomfortable when they had me swallow the camera to allow them to see as they inserted the tube through the stomach wall. I stayed in the hospital, but that was because I had the peg inserted the morning of my second chemo treatment which was done with an overnight stay, so I was in the hospital anyway. That's one on the reasons I had it done along with the chemo.

The mask wasn't a big deal. You just have to ignore the use of it. I listened to music and prayed a lot at the time to divert my attention and to get caught up. I found I had a lot to pray about during this time.

I had two teeth extracted before rad and I have some additional dental things I need to take care of. So far, no big issues have developed except for a tooth on the other side which has crumpled a little around a filling. That will be part of a bridge I will need soon, though, so I'm not to concerned with it at the moment. Just makes eating a little more interesting. Hope all goes well for you.

Nelie, see how lucky you are getting questions answered by those experienced people. When my treatment plan was fixed, I was all alone not knowing what was going to happen on me. Doctors sometimes are too busy to answer patients' questions and moreover, they have not been in the battle themselves. Just to share my own experience here. I can't answer the question about PEG because I never had one and in Hong Kong, only very few patients need one before treatment. As for radiation mask, you need not worry about it. Just lie on the bed comfortably. I was very fortunate that medical professionals in my hospital were very caring and tender. They apologized if I felt uncomfortable. So you may give them signals if you don't like the way they handle you. I needed to have another mask made in the middle of treatment as my neck tumor had become smaller and my face became thinner. I didn't know that and felt scared when I had to get a new mask. I thought there was something wrong until the nurse told me that it was a good sign that my tumors were responding well. As for the teeth, I also kept all my teeth. If someone suggests pulling any of your teeth, get a second opinion. Before treatment, have a thorough clean by a good dentist and if there is a decayed tooth, get it filled instead of getting it pulled. Teeth are more vulnerable after treatment, for sure. So oral hygiene is very important.Don't panic and relax.Get as much nutrition as you can before the battle. Good luck,

Karen.