Tonsil Cancer

no expert
I am no expert or doctor so i would trust their opinions and suggestions. My mom had peg tube had no complications from it at all, of course didnt like it much wanted to eat by mouth but its there incase you need it and most people do. Just think of it as a bandaid and it will get better with time.
Each persons bodies reacts differntly to treatments so you may be able to wrok and have no trouble or you may be one that gets tired and sick real easy. MOm had it easy radaition was very very very hard she had neck throat cancer stage 4. So remember to just have a goo dloutlook and do what they say and suggest and you should be okay. Mom got a little weak from erbitux(chemo) but not enought to make a differnece in her life she did not get sick had some mouth sored and dry mouth but the biotene mouthwash took acre of that for her.

Im thinking you caught this early enough that you shoud have a great outcome but each person is differnt and rects differnt so i will be wishing you well. Not sure what peoples suggestions would be on the whole radiation chemo thing first and i would think it varies depending on location and stage, but after what i seen my mom gone through and from what i have read on here MYSELF i would definately chose surgery and get rid of it first. Radaition leaves scarring and hard to do surgery afterwards and even harder if they have to do radiation again later on down the road. Just my opinion and im sure youll get more opinions. just wanted to give me .02
best ofluck and i will be praying for you
GOD BLESS

soccerfreaks said:

glad you made it!
Welcome, Tim. You will find that you get a number of responses to your questions in here, most of them from folks that have experienced similar situations. That is always comforting, I know, unless they say, "Oh s**t"...and they won't, trust me. Not in this case.

In response to your questions, in no particular order:

There are a number of posts in here regarding dental care. Find them and follow them. I will advise, for now, that you see your dentist, if that has not yet been suggested, and that you get the cleaning of your life. Have them remove any problematic teeth, have them do what they need to do to give your teeth the best chance of moving along with you. Truth is, from my experience, and from what I have learned from others, radiation will rip your teeth a new one, so to speak. So pre-prepare by seeing your dentist.

I am a tongue/neck guy rather than tonsil, so others can speak to that more precisely than I can, but I think we will all agree that you should be prepared for radiation, meaning that you can not just walk in and get seven weeks of rads. I had seven weeks myself, and always got a lathering of a burn-preventative right afterward, and also the night before (check with doc on this before doing it). My expert in this instance is my wife, a wound care nurse, who selected the lotion of choice, and who advises that whatever you do, choose a water-based rather than oil-based one. It seems that the oil-based stuff gets absorbed and may worsen things.

The critical thing with that, though, is that you be prepared, and that you prepare your body both before and after. Talk to doc, of course, and he/she will help with that, but if you don't ask, they may not bring it up. It is not top-most on their personal to-do lists, the rad docs' lists, I mean.

I am scatter-shooting here, but with your cancer you have a VERY GOOD chance, in fact, a GREAT one, of moving on and beyond. Especially because of the stage, but also because of its location. If your docs have covered all the bases and there are no surprises, you should be in good shape.

Yes, being told you have cancer scares the heck out of you. That is because most of us have never bothered to look into it before it impacted us. If you look into yours, I think you and your loved ones will be comforted, Tim, as comfortable as you can be under the circumstances.

Again, you will find the people on this site very helpful, Tim.

Take care and best wishes,

Joe

hi tim
hi tim, most people i've read about or talked to have only discovered they have head and neck cancer in late stages. it is so good yours is in stage I. my dad is just starting radiation and i've been reading through this site trying to prepare too. i posted a list of stuff i've gathered to ask his doctors about on jejdrn's thread if you want to look, it might help? good luck

elaine

Hi Tim - I was stage 4 when
Hi Tim - I was stage 4 when I found out. Never smoked or drank. They removed my tonsils and I started chemo 2 weeks after. Other than being tired and losing hair it was pretty easy for me. No nausea. I had chemo once a week for 3 months. I usually had it Thursday and carried a pump with me injecting Chemo over the weekend. I worked Monday Tuesday and Wednesday and took the rest of the week off. I was a jock, ex footballer and was in pretty good shape. I added 25 pounds before radiation started and went up to 225 lbs. No way was I going to have a PEG tube. I ate fine after my tonsillectomy and through Chemo. Radition was a different monster for me. A breeze to start then my saliva started acting up. My dentist put me on Salagen to keep the glands pumping which gave me hot flashes. Also had to use a floride treatment everyday for 5 minutes and so far 7 months post radiation, my teeth and gums are fine. They were good to start with and needed no work. They are sensitive to extreme cold and heat but work fine. Radiation burns the inside of your throat. If you can imagine scraping your knee on asphalt, then the white and red fluids that appear to aid healing, that's what happens in your throat. That ooze comes in the form of Phlegm and it sticks around for a while. For me it was 5 months before I could stop constantly spitting it up. I cleaned and carried around my Ensure bottles to use as a spitune. I had to spit all night also as you should not swallow it. Still spitting but much less and don't have to carry the bottle anymore. I fought the Peg Tube but I am a registered nurse and it was clear that I was not eating or drinking. Water begin to burn my throat and I went from 225lbs to 175lbs. I was glad to get the Peg tube and had to be put in the hospital to rehydrate myself for a couple of days. I should have known better but wanted to tough it out. I never felt the PEG tube after the procedure. I was not painful at all. I was asleep and had I not known that's why I was there I would not have felt a thing. I finished radiation in July of 2008. I still have some of the effects of it with changes in eating, can't open my mouth as wide and can't swallow as well. I began eating on Thanksgiving. Slow, small bites, soft foods, and don't eat and talk at the same time. I still gag and choke occasionally. That was another thing with radiation, my gag reflex intensified and I threw up just from brushing my teeth. The floride treatments I stopped for the same reason. Just the doctor looking in my mouth made me gag. I still have my PEG tube but do not use it. They will take it out next month if my PET Scan is clear. I am much stronger now even though I'm only at 180lbs. I look good at this weight. Eating is easier and spitting at night is way down. It affects people around you more than you realize even though you are the one going through it all. Especially if they've always know you as this healthy jock who never gets sick, and are the bread winner. It does get better. Just don't have the fast food want it now mentality. This will take time, money and effort on your part. If you are a person who gives up easily, get support right away. I understand why some people give up. If you are positive by nature, smile a lot and thank whatever you believe in that you will be able to someday help someone else get through this. Rest a lot but don't let your muscles atrophy. Keep seeking advise as issues come up. Take care and we can talk about our experiences when we are both done with this.

TIM_WWJD said:

Fireman, thanks for the reply
I am glad to get any information I can good and bad. You didn't say when you were diagnoised but by my math it must have been about a year ago. You said you worked some through your chemo but did your doctor also warn you about low white count and being around sick people? That has me and my wife a little concerned with working.I am starting chemo next Monday and will wear a pump for the week. I asked about doing it over the weekend but they are concerned that if there is a problem with the pump no one would be around to help me. I will get two weeks off then do it again for three cycles. It sounds like you had a more intense chemo. I am also curious on how work went during radiation and after. I am not an ex-football player and have about thirty pounds too much on me already (207) but I am in fair to good shape but I am getting the PEG tube in tommorow when they put the port in. I don't want to go through it during the radiation treatments or when I am weak. I feel confident about kicking this and have a wonderful wife who is there for me. I also have faith that God does not give us more than we can handle. I do realize it effects people around you and I notice that now even before I have had any treatments so I will be concious of this later, thanks for that heads up. Keep the messages coming and let me know how your PET turns out.
Tim

Tonsil Cancer
I was diagnosed in January of last year. Saw a lump while shaving. I had biopsies taken to confirm the diagnosis, then had my tonsils removed. Working around sick people was a concern. I actually work in surgery and was confined mainly to office work which as a manager I was doing a lot of anyway, but it intensified and I was able to do some at home on the computer which was nice. I drove myself to my radiation treatments and then to work afterwards. Once the burns from radiation appeared and broke the skin, they kicked me out of work. They watched me very closely and the staff monitored who came around me (no sick people) and limited my contacts overall. I was lucky in that sense. Today I actually felt more saliva return. That's promising since my mouth doesn't get as dry. I used to always carry water with me but now in my 7th month after radiation, I can eat and swallow better than even last week.
I had a pump with 5-FU for over the weekends Cisplatin, and Taxotere for regular Chemo treatments. I also had weekly Cisplatin while on radiation. My PICC lines were fun for me also. I had the first one in my left arm. It occluded some how and I had to get another one inserted. They inserted it in the same arm and it shortly after that got infected. They put the 3rd one in my right arm which went on to give me a blood clot. Lucky for me it was after my last major chemo treatment and the Cisplatin they were able to put in a regular vein. Through it all I always knew I would get through this no matter the complications (which I did not dwell on at the time. I just wanted it done.) I had to be cheerful for my wife who it tore apart to see me go through this. Had I did like you are doing, I don't think I would have ended up in the hospital. My co-workers and all the docs I work with were very supportive as well as family and friends. Even though I feel like I can do anything right now, they won't let me push myself and resting helps healing. I've never been one to sit around, but I'm more relaxed and take the time appreciate things more. Patience again is the key and having lot's of people pray for you too. It's amazing how one day you wonder how long symptoms will last and the next they're gone and you wonder why and how. I stopped wondering and am now just thankful to be one of God's messengers to try and help others. Good Luck to you and I'm glad you are already ahead of the game.

Kevin

TIM_WWJD said:

Fireman
Thanks, it helps to get an idea on what might be ahead. I realize that every situation is different. I got my PORT and PEG in yesterday, I am a little sore but doing okay. I won't be having the trouble you had with the PICC mine as you probably know is a lot different. I am dealing with this by posting here and my wife set up a web site for me to give updates to friends and family. That was people can check on me if they want and I don't bother those who don't. It is good to talk with someone who is dealing with a similar situation. You seemed to have the same type of cancer and your treatment is real close to mine. If you are ever interested in contacting me off this site send me an e-mail to tim.groce@verizon.net. Take care and God bless.
Tim

Tonsil Cancer
I am so glad you are ahead of the game. As a healthcare worker I was hard headed and should have known better in a lot of the situation I went through. It always happens to someone else and not to me. Call it denial but I tried to act as though everything was normal and I could still fuction at a very high level. This took energy way from healing. When I should have been resting, I was trying to prove I was tough. I think that delayed me to an extent. No wonder I was driving my wife crazy. She saw me as needing to follow doctors orders and I saw myself as superman until I ended up in the hospital. Then I just saw myself as superman Jr. I could look at pictures of myself and see that I was not well. That's another thing you might start doing. Taking pictures of your progression. The pictures I veiwed gave me a better perspective than the mirror. I could see the difference in my eyes. I really believe on some days when I wasn't where I wanted to be, I asked the Lord if he could carry some of the burden for me, and call it what you will, he only left me with what I could handle and I never lost hope or felt like giving up because of that.
I have your e-mail address and will be very interested in your progress. Attitude, support from your wife, family, and friends will help so much. Your belief in the Lord has already seen you as a messenger for him to show that even though you go through this, with him inside you, you will never be lost and this will not be without purpose as you already seek to help others who have this challange. You will be in my prayers as I was and continue to be in the prayers of so many others.
Take Care
k.bowdry@earthlink.net

TIM_WWJD said:

Went to Work
I thought I felt good enough to try to work today. Made it almost four hours but I am beat. I am hoping when this poison pump comes off Friday I will feel better. I don't think I will try to work until it is off. Kevin, I sent you an e-mail but typed your e-mail wrong the first time so I forwarded it the second time. I know sometime people delete forwards so let me know if you recieved it. One thing I do notice when I am at work is how hard it is to think and process things. I made a lot of simple data errors that I normally don't do. I assume it is the chemo. Well take care all and have a good evening.
Tim

mind control
hello,

I have tonsil cancer also, never found out what stage because i didn't even think to ask.

I also found it while shaving, I had a lump the size of a golf ball. Went to an ENT and he said it may be an enfection, turned out no, it was cancer. I got a cat scan and they told me it was on my tonsil and in 2 lymph nodes. Drs told me that I would need 35 radiation treatments and 7 chemo treatments(Cipatin). I have been done for 3 weeks this Wednesday with my treatments, I never had the tube and lost a lot of weight. I was 280, and am now 235. I go in for a ct scan at the end of the month, see the Dr on March 4, they say if they didn't get it all, i'll need surgery to remove the lymph nodes. I can not concentrate, does anyone else have this problem? I also have been eating have decent, but last night my stomach bothered my most of the night, is that from not eating solid foods for so long, my stomach has to get back to normal?

soccerfreaks said:

rickle
I replied in another post to your question re nutrition, and I hope it helps. Re anxiety, re indigestion, re a lack of concentration, these are absolutely normal.

Think about it like this: the chances are that you never cared about cancer before it was stuffed down your throat, so to speak. Now it is a central issue in your life, but you have not spent your life studying it, and you are therefore not as knowledgeable as you would like to be, and you also associate cancer with death.

If that doesn't give you anxiety, I don't know what does.

I like to say that cancer is going to get what it gets...it is going to take an organ, or a tonsil in your case, a lymph node or two or five or 17, but it can't take the other things we let it have.

Your worrying, that is all you. Hope, humor, a positive attitude, that is all you.

I know it is hard not to worry. I really know that. But you have to insist that cancer will not have more than it gets on its own.

Regardless, your anxiety is not abnormal. And a non-solid diet does not necessarily cause digestive problems, as I was on one for months, perhaps even a year. I would advise that these problems may also be part of the anxiety issue.

We all worry, my friend, once we are diagnosed, and some of us, maybe all of us, worry at least in some small corner of our minds, forever.

Hopefully you are in good shape.

Take care,

Joe

Thank you
Thank you very much Joe

TIM_WWJD said:

Went to Work
I thought I felt good enough to try to work today. Made it almost four hours but I am beat. I am hoping when this poison pump comes off Friday I will feel better. I don't think I will try to work until it is off. Kevin, I sent you an e-mail but typed your e-mail wrong the first time so I forwarded it the second time. I know sometime people delete forwards so let me know if you recieved it. One thing I do notice when I am at work is how hard it is to think and process things. I made a lot of simple data errors that I normally don't do. I assume it is the chemo. Well take care all and have a good evening.
Tim

Went to Work
Oh Yeah! That chemo will effect your thinking and energy. I still tell people if I make a mistake that the radiation effected my brain or that I still have chemo in my system. Just keep an eye on your immune system especially this time of year and stay away from sick folks.
If and when your taste buds disappear or your hair starts going on vacation, depending on what you do, you might want to think about cutting back on work a little bit or see if they can hook you up from home. I was able to get computer access from my job to work at home on many things. You have a wonderful web address and I have been contacting you there. I'll follow your updates and keep giving you motivation. We can do this!!!!

Kevin

Fireman said:

Tonsil Cancer
I was diagnosed in January of last year. Saw a lump while shaving. I had biopsies taken to confirm the diagnosis, then had my tonsils removed. Working around sick people was a concern. I actually work in surgery and was confined mainly to office work which as a manager I was doing a lot of anyway, but it intensified and I was able to do some at home on the computer which was nice. I drove myself to my radiation treatments and then to work afterwards. Once the burns from radiation appeared and broke the skin, they kicked me out of work. They watched me very closely and the staff monitored who came around me (no sick people) and limited my contacts overall. I was lucky in that sense. Today I actually felt more saliva return. That's promising since my mouth doesn't get as dry. I used to always carry water with me but now in my 7th month after radiation, I can eat and swallow better than even last week.
I had a pump with 5-FU for over the weekends Cisplatin, and Taxotere for regular Chemo treatments. I also had weekly Cisplatin while on radiation. My PICC lines were fun for me also. I had the first one in my left arm. It occluded some how and I had to get another one inserted. They inserted it in the same arm and it shortly after that got infected. They put the 3rd one in my right arm which went on to give me a blood clot. Lucky for me it was after my last major chemo treatment and the Cisplatin they were able to put in a regular vein. Through it all I always knew I would get through this no matter the complications (which I did not dwell on at the time. I just wanted it done.) I had to be cheerful for my wife who it tore apart to see me go through this. Had I did like you are doing, I don't think I would have ended up in the hospital. My co-workers and all the docs I work with were very supportive as well as family and friends. Even though I feel like I can do anything right now, they won't let me push myself and resting helps healing. I've never been one to sit around, but I'm more relaxed and take the time appreciate things more. Patience again is the key and having lot's of people pray for you too. It's amazing how one day you wonder how long symptoms will last and the next they're gone and you wonder why and how. I stopped wondering and am now just thankful to be one of God's messengers to try and help others. Good Luck to you and I'm glad you are already ahead of the game.

Kevin

Fireman
did you have any surgery to remove the infected lymph node that you found on your neck?