Hi all, thanks to everyone who has posted information here, it has been very helpful. I am having neck dissection on Wednesday (8/29) to remove a recurring tumor along with 20 lymph nodes. I had a partgloss on 9/6/11 which has now spread to the lymph nodes. I wasn't really surprised when it came back but am much more nervous this time around b/c there will be rad/chemo this time. Reading post here has given me some good info, but kinda freaked out too. Reading about the rad "masks" REALLY freaked me out. I had never heard that before. Hate that so many others have had the same or worse but glad to know there is a place to get good information.
Hope everyone has a speedy recovery for whatever you are currently under going and God Bless...with HIS help we will survive!

Welcome to the forums. Hope you continue to post as I have found them so supportive and informative as you continue this journey. Wishing you a quick recovery from surgery. Ask your doctor about exercise for your arm after surgery. The intern doctor forgot to give my husband the exercises and he really had a sore and drouping shoulder for awhile. Physical therapy helped and it is fine now.

Hi there - you and I have had similar cancers - and there are quite a few of us here... ( women - relatively young, non smokers, not heavy drinkers ) - Interesting new demographic - anyway - welcome... Sorry you have to be here but it's a great forum. Most of us here have had rads and chemo and the responses to it have run the gauntlet. Some get through it ok... Some really struggle - most fall into the midline of not great but doable. Hope you are in the top percentile

The mask looks horrific - I'm not claustrophobic but when they were making my mask. I admit I was shocked at being locked down to the table. it's for your own good to keep you from moving. After that it was ok... I closed my eyes and zoned out ... If you are claustrophobic there are meds as you probably know. - eat up... Healthy foods if you can... Eating and taste begins to get hard and unpleasant at around week 3 -4. If you have any questions feel free to ask and good luck with everything. Hugs!

I had my mask made this past friday. I too was very scared but I had done my research here on the OCF and took the advice of taking an axiety medication. If you are able to take the medicine I highly recomend it. I took .5 of a xanax and prepared myself to think of being on a fishing trip at my favorite spot.
It was a piece of cake and over in no time. It's a mental thing. Nothing physical to it.

Figure you out a favorite spot to let your mind take you, the beach, a sport, a rememorable vacation ect..... and when they lay you down to start the mask, just go there.

If you are able to take medicine, have a driver and remember to take it about an hour before the precedure to give it time to kick in.

Good luck!!!!! It will be fine.

Thanks everyone for the advise. Will try to keep it together for the rads...after all that's just another piece of the puzzle to recovery. My husband told me to stop reading since I keep busting out into tears when I read another story or outcome or learn something new. But I feel like I need as much info as possible so I know kind of what to expect. Didn't have rad/chemo first time around so this time it is hitting me a little harder. Knew the day I had the bio that it would come back as cancer again...not sure how, just did. I'll stay as calm and positive as I can and will fight like hell to beat this thing and hope that it doesn't come back again. Although from what I have read, seems the odds are pretty that good that it will. Thanks again for all of the advise.

Also wanted to ask....how or when do you/will you know if you will require a PEG? I think that is the other thing that is freaking me out a bit.

Denise,
I believe that the statistics are if you did not have radiation & chemo the first time, only surgery, you have a better chance of cure with having all three this time. The chemo will boost the radiation effect without giving you more radiation, and I would think for you that it might be recommended. It is true cure statistics don't mean very much to the individual in cancer--it's 100 percent survical or 0 percent, but I think your doctors would tell you what I just said.

Crying is ok--it is a good way to get rid of stress and come to terms with it. I did not cry (my husband did though) until it was time for radiation. Then I couldn't stop for a while. After that I was much better.

PEG--I did not have one, but there is nothing wrong with having it. I ate food, hardly touched the Boost, Ensure, Carnation drinks. I would advise you to consume those drinks in addition to eating if you are not using a PEG. Those drinks are nutritionally balanced, and it is easy to miss some key nutrients if you don't. I was ok, but just sayin' what I should have done. Your doctors should be able to advise you about the PEG. Some people get them & then eat food too as long as possible, and that's ok.

Best,
Anne

Some drs insist on a peg mine did, and it didn't matter I couldn't keep the formula down so I cringed and drank my meals near the end and didn't use the peg at all. If you're small a peg might be a good idea particularly if youre sensitive to pain. I don't say this to scare you but for a few weeks near the end you'll likely have mouthsores swallowing and eating will be unpleasant.

And yes this place is scary as hell! What you need to remember is - we all have our own story, just because something happens to one person, doesn't mean it will happen to you. We're all individuals with our own histories, health issues, and positive things going for us. Do educate yourself. Knowledge is power. You'll get through it. Hugs!

Denise, welcome to OCF. Think of a feeding tube as a tool or piece of useful medical equipment. Some patients prefer to go without one and expect to have it placed if it becomes necessary. Other patients are better prepared and figure they will get one and practice so its there if they need it. Honestly, if you are getting both chemo and rads I would recommend having the feeding tube prior to starting treatments. Its so much easier on the patient to have it in advance than to wait until they are becoming dehydrated and malnourished to put one in. Of course this is a personal choice and a temporary nasal tube could always be used if the patient doesnt struggle until the very end of treatments. It all boils down to your nutrition, the better you do with it and hydration the easier a time you will have of getting thru this.

I know its scary hearing all this. Try to think of it in a clinical way, its all part of what it takes to get you well again. Knowledge is power and should not be feared. You are among friends who have been down this road and will help you get thru it.

Best wishes!!!

Denise,

Some of us want to learn everything we can in advance even if it hurts to learn. Perhaps it's our way of easing into the process. Some don't want to know anything. Do what your body tells you.

Re the PEG, we have what we refer to as "The PEG Wars" on this site. The ones that advocate for and against the PEG. I am one against the PEG because I have seen many who end up lifetime dependent because they had it. My RO told me it was up to me and I said NO WAY, a feeding tube is for sick people and I'm not sick! Yeah my stubborness almost killed me but I was talked into a nasal tube in my 2nd week post Tx and I had it for 2 weeks and it REALLY made a positive difference. The nasal tube is fed down thru your nose into your stomach. No surgery and very little discomfort. When you no longer need it, it's just pulled out. I even was allowed to do it myself at home. My point is that it's true that a feeding tube can be a very effective tool in delivering much needed calories, hydration and meds but if I had to do it over again I would wait until I needed it and then go with the nasal tube vs the PEG.

Denise

I have two radiation masks and we had some posts here on how afterwards they can be turned into "art". Here is a link to some images of the masks, before and after that may put it into better perspective. It's just a warm plastic mask that is fitted to your face so you don't move. It never bothered me at all especially because I asked them to make the mouth hole a little larger.. radiation mask art
As far as the feeding tube, doctors are split. Some advocate or even require it, others like my doctors feel that it can hinder the ability to recover swallowing since without the PEG, you constantly adjust your muscles to keep swallowing.
There is no doubt that a PEG is easier, and unless you have a psychological benefit/need to get thru without one (as I did), it will be hard. For me, it was an important signal that the cancer was not in charge, and the benefits of not having it easily outweighed the hassles. For many patients, it's just not a big deal and has no significance. Most "opinions' reflect what their doctors told them. It's a personal decision, with no "right" or "wrong".
Charm

Hi Denise

I am seven months out of chemo/rad treatment, and the bad memories faded fast. The mask was not as bad as I expected. It did feel tight to start with, but as others have said it helps to keep you still. I would have been more anxious about having to keep myself still without it I think.

As for the PEG, I had a RIG (similar to a PEG but put in from outside and kept inplace with a water filled balloon) for 5 mths. I was dependant on it for 2 months, after that it was an aid to get enough nutrition and as a result I stabalised my weight loss very quickly and even began to weight back on. I didn't like it because it irritated me as I moved, but it was a God's send as far as maintaining my weight. I had a very sore mouth first from having 10 back teeth out, then from chemo and then rads. I found eating very difficult and felt very bad that I wasn't managing it so the tube took away the pressure. I did keep swallowing warm water and natural yoghurt through the worst times.

Everyone does seem to have very different experiences of the whole treatment, so here's hoping it goes well for you.

Best wishes
Sally

Thank you for the info, I think. Seeing the mask does help so I know what to expect but I'm pretty I won't be making it into "art" afterwards. Surgery is Wednesday and getting pretty anxious right about now. I do appreciate all of the information everyone has given on this site. Without I would have be completely unprepared for what I really am up against. It's hard to not get emotional but I guess that's just part of the process. Getting a little worried as there are new "spots" on my tongue just since in the last few days. Staying strong and keeping the faith. Good luck to all that are posting on this sight. I'll be back on after the surgery...here's hoping all goes well!

Best wishes for your surgery on Wednesday - being in good physical shape will help you bounce back quickly.
Maria

Denise are you being seen at a ccc? I'm not sure which one is in Nevada but its your best chance at beating this - Hopefully whatever is on your tongue is irritation but show it to your surgical oncologist prior to surgery he may want to remove it too. Base of tongue cancer - BOT - usually responds well to just chemo and rads - but oral tongue cancer usually needs surgical removal of as much as possible first. I'm not sure why but oral tongue cancer seems to be more aggressive and stubborn in some people. Best of luck on your surgery, hope it goes well. You'll be stiff and numb but it's not terribly painful. Take care.

I bet you came thru fine but are glad it's over. Good thinking on your part is a big plus.

Hi, Denise:

Welcome to the forum. Unlike you, I joined the forum just a couple of months ago, long after I finished treatments 4/28/11. However, I still find good information here, and it's also good to interact with people who understand exactly what we're going through/have gone through. Other than the gender differences, our stories sound very similar. I had a partial glossectomy and neck dissection (17 lymph nodes) 6/16/10, recurrence in Jan. 2011, began chemo 1/17/11, second neck dissection (18 lymph nodes) 2/24/11, and 28 rounds of radiation that ended 4/28/11. Eating was difficult during treatments - the week of chemo was not so great, the second week was worse (mouth sores), and the third week was the best for eating (before they hit me again the next week). Radiation really wore me out. Luckily I was able to work from home a lot during treatments because it would have been too hard to put in eight hours straight. I did not have the PEG....I was determined not to have one because I didn't think that was "eating". Sixteen months out, I'm eating everything; although I have stayed on Protonics since heartburn seemed to occur more without it. My neck healed really well after the first surgery. The second surgery was a little tougher since I had an egg-sized tumor and neck muscle removed, so I still deal with neck mobility issues, twinges, some pain, numbness, etc. Hope I didn't say too much to freak you out, we all have different side effects and reactions to treatments/surgery. Best of luck to you, and I'll be looking for updates!

Hi all, Well had the neck dissection surgery last Wednesday and it went pretty well. Waiting on the path results but she feels like it is stage III since it moved from the tongue to nodes. The tumor was the size of an egg and was attached to a main muscle so that had to go too. Spent 2 nights in the hospital and now home resting and recovering. Everyone says the incision looks really good but I think it looks like I was in a night fight. Cut from ear to throat on the left side but she thinks she got it all, so trying to stay positive. I'll see the RO next week to set rad/chemo schedule. So round two begins...Hope that everyone has a great Labor Day and hope we are all here to see it again next year!

Hoping the same for you! Faith! prep for treatment best you can - read up on what happens and how to off set it prior to things getting really bad - forewarned is forearmed. Hugs!

Denise, I admire your courage. You've been through a lot and you're bearing it with grace and humor. The last is very important!

There are plenty of people here who can give you great advice on preparing for rads and chemo. Many, including me, will tell you to eat as much as you're able to to before the treatment starts. Also to get a thyroid baseline now so you'll have something to compare it to later, as radiation can mess with that. Plus of course to see a dentist for an evaluation of the health of your teeth, as rads will affect salivary function - to a degree specific to each of us.

Keep asking questions. Sounds to me you're in good hands.

My thoughts are with you.

Wishing you a speedy recovery and continued strength during the treatments. Stay positive, stay strong!

Tomorrow will be the meeting with the RO to fit the mask and outline the schedule and next Tuesday with the MO. Must say I'm nervous about being fitted for the mask but I am prepared so hopefully I will do Okay. Also getting nervous about what eating will be like once treatment begins. I've read a lot of stories/cases here so I am getting some ideas about what to expect but apprehensive all the same. I am really trying hard to stay positive and not feeling sorry for myself but same days it is hard. Never really been scared about dying before, but this time around does have me thinking about it more. Thanks All for the encouraging words and the great information.

Try not to fret - usually its about week three things become unpleasant. The mask is something you have to get used to - try to close your eyes and daydream through it. I meditated. Good luck!

Re the mask, just prepare yourself for a very confining moment. Most here were just unprepared for that experience and that made it worse.

Re the food and Tx issues, you will loose your taste and appitite and you will loose a lot of weight and will regain most of your taste, appitite and weight but very slowly over a 2 year period so the advice we give everyone at your stage is to eat all your favorite things without any of the normal concerns. My taste started to go about the 2nd week of rad and it was really frustrating to put something in my mouth knowing what it was going to taste like but then realizing what I just put in my mouth tasted like crap! Do yourself a favor and eat whatever you want; however much you want and when you want it until it happens to you. Hot Fudge Sundae for Breakfast!

About the mask fitting, you could ask if they provide music or you could bring your own CD for them to play. The music helps to distract you and have an idea how long it takes and how close you are to finishing. Also you might be able to listen to an audio CD of a favorite book. If you get really anxious, ask if they can give you something to calm you. Hope everything goes just fine for you!

You will be fine! It doesn't take that long and isn't too uncomfortable. I used to play games in my head countries or animals for each letter of the alphabet! Or listen to music but I found that made it seem longer for me. Good luck with it all soon it will be a distant memory x

They had a radio on which was nice. After a few sessions I started counting the zaps. The machine made a noise each time it gave a dose of radiation. There were 8 zaps, so I would just count them to know how much longer it would take. 7 more, 6 more etc. It was easier for me to know I could make it and just relax!

Well that actually went pretty well but I will need a Xanax to get through the treatments. No way can I stay clam for 20 mins since I'm VERY claustrophobic. They did say I can bring my laptop to play music so that may help some too. At this point I'm just ready to begin so it can behind me and the healing can begin. Thanks everyone for the advise, it has really help and thanks Davidcpa for the "Okay" to have hot fudge sundaes for breakfast! I've been trying to get a lot of vitamins, grains and fiber but have to confess I have had a lot more ding dongs and frappes lately too!

Sometimes they cut holes in the mask for your eyes. The technicians said they sometimes do that for clautrophobians. (Is that even a word?)

I ate a lot of Hagen Das

the center i go to gave me a flexible ring to play with during my treatment today. i questioned it as i had never had it before. they said it was to keep my hands busy. it worked. i wrung that thing out and all my frustration from the treatment went to the ring. maybe you can ask if they have something like that.

Alex set himself the task of predicting where the machine would go next and then when it would go there. By the end of 35 treatments, he could close his eyes and open them again, knowing exactly where the machine would be. Concentrating on a task or making it a game, keeps the mind off whatever fears and phobias you may be battling.

I must admit though - the music sounds like much more fun to me (unless it is underground New York punk - Alex's idea of music).

The ring to wring also sounds good - I could use that when I am on the phone to bureaucratic public servants who follow procedure no matter how illogical or irrelevant!!

but the winner might be Xanax plus attitude. Hopefully you will come to a point where you know you and that machine are kicking that cancer and the 20 minutes each day represents life over death.

On my second go around I made a game of it and challenged the tech's to bring in their own CD's for me to check out. Found some interesting music along the way and never knew what was coming next. The tech's got a kick out of it too and put together a few goofy CD's just for me. It�s hard to laugh when you have a Popsicle stick in your mouth.