CSN Login
Members Online: 12

Tonsil Cancer

TIM_WWJD
Posts: 38
Joined: Jan 2009

Thanks soccerfreaks I will give this a try. I use computers at work and to send e-mails but I have never tried this before. Heck of a reason to start. I am told my cancer is in stage one and I discovered it when my lymph node swelled up so it is in two locations. I never felt pain or discomfort (until the diagnosis started. I have not met with all the doctors yet but I will be starting a chemo treatment which will be 24/7 for five days and off three weeks. This will continue for three times. I will then have radiation and chemo for seven weeks. I have spoke to a couple of doctors one local and one at OHSU and both aggree that this has a very good chance of success without doing surgery. I have started reading things to prepare myself and I found this site very helpful. Thanks to all of you who are willing to share your experiences. I am sure I will have many questions in the future but here are a few.
What can I do to help prevent losing teeth from the radiation?
Is there any complications with the peg tube that doctors don't tell you about?
And has anyone continued to work at their job through the treatments?
Thanks Tim in Oregon

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

bany
Posts: 38
Joined: Jun 2008

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

TIM_WWJD
Posts: 38
Joined: Jan 2009

Thanks for all the encouragement and like I have heard most of this is keeping a positive outlook. So far it has been easy on me and hard on my wife. I am sure once the treatment starts the work starts for me. Joe thanks again and yes the tooth issue seems to be a big deal with what I will be having done. I saw the peridontist yesterday, the pre treatment appointments are so draining, anyway he examined and x-rayed and says I am in good shape. I will go to my dentist to get a good cleaning and double check for cavities. For anyone else having raditation around the mouth you must take real care to make sure your teeth don't have problems afterwards. This doctor explained all the bad stuff that happens if you have to have a tooth pulled afterwards. I will be wearing my flouride trays faithfully and having my teeth cleaned four times a year. Besides the oral hygien issues everyone I have seen feels the complications will be short term. The induction chemo i am getting is relatively new so I have questions about reactions to it. I also would like to keep working just to keep my spirits up but the chemo doctor says there may be an issue with white blood cells and getting any sickness would be bad news. So now I am re-thinking this. I also would like to say to anyone who is going through this to get all the information you can. Sometimes it seems overwhelming but at least then you have questions to ask the doctors. and write those down don't try to remeber, I forgot my list when i went to one appointment and forgot to ask half the questions I had.
Thanks all, Tim

Fireman
Posts: 28
Joined: Feb 2009

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
Posts: 38
Joined: Jan 2009

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

Fireman
Posts: 28
Joined: Feb 2009

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
Posts: 38
Joined: Jan 2009

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

Fireman
Posts: 28
Joined: Feb 2009

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
Posts: 38
Joined: Jan 2009

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

ricklevans
Posts: 14
Joined: Feb 2009

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

ricklevans
Posts: 14
Joined: Feb 2009

Thank you very much Joe

Fireman
Posts: 28
Joined: Feb 2009

Hi Rick;
I totally agree with Soccerfreaks. You're going through a lot right now and your body is going through changes also. So mentally and physically you have issues to deal with and a lot of uncertainty to go along with it. Humor and a positive attitude goes a long way. How do you obtain humor and a positive attitude if you've never had one? It's a decision you make, people you associate with, and effort on your part. In a weird way, you've now been given the opportunity to view your life and how you will live it differently from now on. I've taken on this challange and I am kicking it in the butt.
As everyone and every case is different, during chemo I craved salads, vegetables, fruits, and water. I never liked that stuff before but my body begged for it. Now it's part of life I enjoy. But that's just my experience. I actually did not lose weight during chemo, but went from 225 to 175 after radiation. I'm at a point now where I can manage my weight. Though I might have questions hidden in the back of my mind, I am going to enjoy my life and hopefully help others in the process. Stay with us as your treatments progess and hopefully we can help you through other issues you may have.

Fireman
Posts: 28
Joined: Feb 2009

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

ricklevans
Posts: 14
Joined: Feb 2009

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

Fireman
Posts: 28
Joined: Feb 2009

I had a biopsy on the lump, 1st a needle biopsy and then an open biopsy where I had to go to surgery. This was just for diagnosis. Once the cancer was confirmed, I had both tonsils removed. I had this done in February of 2008 and began chemo in March of 2008. The chemo made the lump vertually dissappear. My Oncologist said the results were very dramatic. I went through chemo and radiation, but had no further surgery.

jack55
Posts: 4
Joined: Jul 2009

I'm reading your post late. I just joined this site yesterday. I've been reading alot of posts looking for those wlth similar experiences. I was diagnosed with stage 4 cancer in a lymph node, right side of neck. The PET scan also showed a spot behind my right tonsil. I had a radical neck disection and my right tonsil removed in March 2009. Shortly thereafter I underwent 7 weeks of radiation (5 days a week) and chemo (once a week).I finished my treatments 7 weeks ago. The mucous has subsided, I never got the feeding tube as I was able to swallow througout my treatments. I'm eating soft foods (eggs,pasta,soup). My throat is still senitive. Its sometimes painful to swallow and talk at length. Did you experience this and how long did it last? I too have always been very athletic, don't smoke and try to eat right. Oh well, its like I tell my wife, its doesn't solve anything to ask why me. I'll just take the hand thats been dealt me and move forward. I'm very confidant and positive that we will beat this. This site has made a difference. Hope all is well with you.

mentn
Posts: 4
Joined: Feb 2009

There are so may things I don't understand I don't know where to start. I had surgery 5-06 to remove a simple cyst WRONG it was SCC Primary was located in my R Tonsil 1cm Doc's at
Vanderbilt want to do Chemo and Rad with poor prognosis. I went to M>D>Anderson where they were like hey we can fix this treatment plan of 30 IMRT and Radiation no CHEMO. It wasn't a cake walk but not nearly what I feared. It just seems like everybody on here had Chemo
dont get me wrong I don't want it and I trusted the staff a M.D.Anderson with my life and I
would do it all over again. Did anyone else on here get by with Radiation only? I feel great and enjoy each day except for that little fear in the back of my mind that it could come back.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Not everybody on here had tonsil cancer, for one thing. I had tongue and neck cancer and therefore had surgery followed by rads and chemo (the latter two to clean up any 'strays').

The bottom line is that each case is different: every individual, obviously, is different from the next, but so is every cancer case. In determining your treatment, I am sure the fine folks at MD Anderson considered the location, type and stage of your cancer, along with some of your physical traits, such as weight and overall health, among other things.

Congratulations on your survivorship, and hoorah to the staff at the hospital in Houston for providing a great resolution for you!

Take care,

Joe

TIM_WWJD
Posts: 38
Joined: Jan 2009

I haven't been in any shape for the past couple of weeks to look at or add to this thread. I would like to respond to what was said about treatment options. Joe was right there are as many options as there are cases. I think you have to do two things, research your doctors before choosing one and second and most important is once you pick them trust their experience. It doesn't hurt to get second opinions but once you start don't second guess what your doing or they are sugesting. I have tonsil cancer and have chosen a chemo regiment followed by seven weeks of chemo/radiation. I started my chemo 2/9 and wore the pump for a week. I was ill prepared for how hard the side effects would hit me. I get two weeks of recovery between chemo weeks and I am just now feeling pretty good. Here is my live and learn for those just getting started. If your cancer is in your throat get a feeding tube before treatment starts. I have one and it was in use the second week. On chemo you need to keep fluids and nutrition up. Fluids to build electrolytes are a must and I had no desire to drink or eat. My apitite was gone and everything tasted funny. The feeding tube kept me going. My doctors have set a ten percent weight loss as the max before they stop treatments. I know different doctors may allow different things but your body needs the weight to recover. Another thing I advise is rest, I tried to do too much the first week and paid for it. It is hard to sit and do nothing if your use to doing and working. Wow I had better stop this is getting too long. Thanks again Joe for your faithfulness to this site. Kevin thanks for the post and I will keep you updated.
Tim

Bobert
Posts: 4
Joined: Mar 2009

I also found mine shaving, lump on the right side of my neck. I had a FNA which called the lump a cyst, my ears, nose & throat still wanted to remove it so we did. I was schocked (non smoker , non drinker) when he told me the lab report was SCC. Then we took the tonsils out and cancer was in the right tonsil the starting point. I just finished 7 weeks of rad. & chemo. 8 days ago. No peg tube for me, but I would advise anyone who will have 7 weeks of rad. to get one at about 3 weeks. I'm down to 203 lbs from 247 lbs. Without taste I forget to take calories. Going back to work next week, very gald. Best wishes to all on this site

TIM_WWJD
Posts: 38
Joined: Jan 2009

Bobert
It sounds like you had the best results on this I have heard of. If someone had to go through this it lookslike you are doing great. I also did not smoke or chew and drank moderatly and was just as shocked I had tosil cancer. It has caused me to try to figure out why. I grew up with parents who smoked and worked for years in a smoking allowed company until Oregon passed a law to remove smoking from indoors. I was bad about eating enough fruits and vegtables, I heated my lunch up in plastic containers in the microwave and drank diet sodas. If any of these things are similar to you please let me know.
Thanks Tim

slevtov
Posts: 5
Joined: Dec 2008

My squamous cell carcinoma, left tonsil, apparently was caused by two things: (1) 9 years of performing underwater exercises as a Navy Seal in highly polluted waters and (2) Smoking.

I wish I had seen your email when you first wrote and had not yet undergone radiation or chemotherapy. Since your malignancy is a Stage 1, you would, I think, be a great candidate for red laser light treatment--instead of surgery, chemotherapy, and radiation therapy. Here is the website to go to to read about it: www.umm.edu/news/releases/laser_light.htm It destroys only the malignant tissue and apparently has no side effects. They would not accept me for such treatment of my squamous cell carcinoma, left tonsil, in 2004, because it was Stage 4 and was thus by that time too thick or deep to be penetrated by the red laser light.

Instead, I went through the "golden standard" of radiation & chemotherapy, sometimes combined, so-called sandwich therapy. It was very hard, but I stuck through it to the end and never had any kind of feeding tube. Once that was over and the PET/CT scans showed no residual cancer anywhere, I went to Israel, where I had immunotherapy, using the lymphocytes of my only sibling (who, purposely, was not a good HLA match), to target any cancer cells that might remain in my body, too small to be picked up by a PET/CT. You can read about Dr. Shimon Slavin's immunotherapy at the following website: https://www.remedy-tours.com/content55.html

It is now 4 1/2 yrs. later and there has been no recurrence. However, thanks to the radiation, I have almost no salivary gland function and my ability to taste anything pretty much doesn't exist. For a long time I would ask my doctors when taste would return, and they would string me along, saying that it would soon. Finally one unorthodox, courageous intern admitted that it would probably never return.

Incidentally, don't let anyone talk you into a tonsillectomy following radiation and chemotherapy: There's no point to it, since, if the cancer returns, it could return anywhere along the gastro-respiratory tract and anyway, your throat would not heal from the surgery for a long, long time, because of radiation changes.

Best of luck to all of you!

chinaberry25
Posts: 8
Joined: Apr 2009

My husband has cancer in his left tonsil. It has spread to his lymph nodes in his left jaw. The doctor started him on 2 radiation per day for 6 weeks. And also 6 Chemos which may be cut to 4. Feeding tube and all. So far is doing well, but has bouts of nausea from radiation. Lost a good deal of weight. the VA said his comes from Agent Orange used in Vietnam. James has never smoked, chewed or dipped. Has always been healthy til now. Will keep you posted for his DR. said that he had an 80% cure rate.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

http://csn.cancer.org/node/167887

slevtov
Posts: 5
Joined: Dec 2008

Anyone with tonsil cancer--especially that has spread about locally--should, of course, go along with whatever treatment is recommended by his doctors. And usually if that treatment includes radiation and chemotherapy, the result should be that a later PET/CT scan will be negative for any cancer.

The important thing to bear in mind, though, is that head and neck cancers have a high statistical rate of recurring, not necessarily exactly where the initial cancer was found, but usually somewhere along the aero-gastric tract. How can you prevent it from coming back?

Based on our experience, we would recommend, once you've completed the "gold standard" for treatment and have the least residual malignancy possible, that you look into immunotherapy. Although I went all the way to Israel to have that follow-up immunotherapy at the clinic of Prof. Shimon Slavin, I believe something similar may be available here, maybe at the N.I.H. (National Institutes of Health).

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

Hi Tim,

I went through the same treatment at OHSU and St. Vincents in the winter of 2005/06. I haven't been on this site much lately as I've been so busy with a new job. If you have any questions I can answer (I also had squamous cell carcinoma of the tonsil with 2 lymph nodes also infected) I would be happy to answer what I can.

Wayne

souplady's picture
souplady
Posts: 10
Joined: May 2009

Hello,

I have just recently found out that I had a tonsil cancer. I do not smoke or drink so this came as a surprise to me. I have recently discovered that it is becoming more common to get this squamous cancer on the tonsil and not be in the usual categories. I understand that it is considered an non hpv or an hpv which at this point I do not know which I am considered to be.
I found my mass when I happened to be washing my face and noticing a hard lymph node. I had no other symptoms or lumps. I was sent to an MRI which showed positive for a mass then was referred to an ENT doctor who discovered the mass on my tonsil.
The doctor felt we found it early and suggested the course of treatment and then referred me to the radiation oncologist to get his perspective.
I was faced with two options.
Have a biopsy then if it was definitely positive have radiation then chemo or have the biopsy then if tested positive have the tonsil removed, and surrounding lymph nodes.
Both options seemed reasonable. I also have an issue with gag reflex so did not really want to attempt a needle biopsy and because it was pretty certain it was cancer I had the option to go in for surgery under a general and the doctor would pull out the tonsil with mass, do frozen section and while I was still sleeping to have it sent for a result. If it did come back as positive then he would proceed with the large hard lymph node being removed and surrounding lymph nodes taken out with a neck disection. After much thought I decided to go in for surgery to remove the tonsil with mass. The reason I did that was I thought with it removed I would start fresh with not tumor and that less radiation would be needed since the tumor was not there and I would not necessarily .need chemo if I went that route.
The surgery was done last Monday, tumor was positive. The surgery was supposed to take 2 hours but lasted over 5. Complications arose because the tumor they thought was on the lymph node was actually wedged between the jugular and the lymph node which made it tricky to remove. I got the pathology report and it showed out of 56 nodes taken out only 4 near the tonsil were positive for cancer. Overall the prognosis looks good.
I was told that the surgery would be the easy part and the radiation would be difficult.
I have had a miserable week. The neck and face is so swollen that I can barely move my neck. Swallowing is next to impossible, I have been having ear pain and overall feeling very weepy. I started to wonder if this would be worth all that I am going through and maybe not go with radiation at all since this was a sample of how I was going to feel during the treatments.
SO I guess my question for those out there with the same problem, who had surgery to remove the mass before they started radiation did you have the smae issues with your ability to eat and have swallowing issues? I would love to hear feedback. Thanks everyone

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

All though my cancer was not tonsil, but sinus. I had surgery then radiation and I would say all though the side effects were awful, (dry mouth, swallowing problems, sinus dryout) I dont regret my decision to have the IMRT treatments. I did not want a reoccurence of the cancer and felt I needed to do whatever it took to not go through it again. All though no treatments are guaranteed, 7 months after my last treatment Id say Im 80 - 90% back to "normal".

Radiation is not easy, get all the help you can get from your doctors, (feeding tube, pain meds, aquaphor for the skin, mouth medicine to numb your throat) that will help ease the discomfort you are having to deal with.

Hang in there, Its gonna get better. One day at a time :)

Sirena

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

Yes the tonsillectomy was terrible but after about 10 days the worst is over and you start to feel better. Keep trying to stretch the neck and keep it moving, that will help in the long run. Keep drinking and eating to keep the swallowing reflex trained.

Please go forward with the radiation as there is no cure with surgery alone. Radiation is really what it takes to kill this beast. The chemo can make the radiation much more effective, a one two punch if you will, but chemo usually isn't a primary treatment.

Get the PEG tube put in right away, you will need it.The first week or so of radiation/chemo isn't bad either but towards the end of the second week your taste buds will start to go. After that swallowing food became awful for me as the taste was so bitter and I lost a lot of weight. Once I got the PEG tube in that all stabilized.

It is a terrible and painful treatment but we'll be here to help you through it. You have a new life now, not one you wanted but to survive you will have to be strong and determined to do whatever it takes.

Get in to see a dentist NOW and get a thorough cleaning. Get some of the fluoride rinse he uses so you can rinse with it every day. The radiation is hard on the teeth and an infection can get out of control once your body's defenses are down. You want to be as healthy as possible before the radiation starts.

Also, plan some meals ahead for the next couple of weeks of your favorite foods and tastes. It may be a while before they taste the same (or similar) again. Putting on a few pounds (if you are an average person) probably won't hurt as you will lose them all during the treatment. You can't gain or lose too much weight after your mask is made or it doesn't fit properly anymore and all the prep work has to be redone.

Wayne

souplady's picture
souplady
Posts: 10
Joined: May 2009

thank you Wayne, i thought I was totally prepared for the surgery, feeling like I knew what to expect but was so wrong. The tonsil, neck is so sore that it burns and I find it too hard to deal with. It has been just over a week now after surgery and it still hurts so much. The doctor told me initially that I would have no trouble eating or anything after surgery but I guess since he had to do so much more surgery that the outcome was not what was desribed.
Today I see the surgeon and the chemo doctor to have them go over the report and suggest what treatment he feels is best for me. I was discouraged yesterday when I posted my comment, worried that I was not going to be able to go thru the side effects of radiation but after talking it thru with a friend she reminded me that I do not have to decide about anything next week or next month that I only have to decide is what I want to do for today...that got things back in perspective so I guess I am ready for the next step. I just got a little scared I guess. Having to face this alone without family members near by is hard when you are face with this journey but you begin to see what quality of friends you have when things like this happens.

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

You are never alone in your fight to beat cancer. All of us here are here to help those that need it. Please feel free to email me here or at my personal email address sirenaf40@aol.com anytime you just need a cancer buddy :)

Sirena

souplady's picture
souplady
Posts: 10
Joined: May 2009

thanks Serena, I appreciate it. my email address is jwandpa@gmail.com it would be great to have someone out there who understands. So far this site has been very informational and I have felt comforted knowing that others are out there who have been through the same things.

Today I saw the chemo doctor and found out the stage of my cancer and suggested treatment. I was caught a bit off guard when he told me I should also have chemo combined radiation treatment. I was expecting to hear in my case since I had the surgery I would not need the chemo.
The other things I was surprised about is the stage of cancer. I was told the staging for neck and throat cancer is different than other types but I was told it was a stage 4. I was floored. My primary tumor was in the tonsil and was a bit over 2cm and there were 4 other nodes in the same area that also tested positive. I thought that since it was not advanced in the other regions of my neck and limited to a small area that I was in a good place. The surgeon thought that I should be about 80% curable with radiation. In talking to the chemo doctor it does not sound as much. The cancer has not spread to any other organs or areas within the head. I am told now that I have a higher risk. So now the decision is what to do with the treatment. He also gave us an option for a different type of chemo treatment.to combine with the radiation and it is called Erbitux and us supposed to be less harmful to kidney functions as well as it foes not cause your hair to fall out or any other serious side effects. The only effects it has seems to be a rash and diareha. This method has been around for less time than the usual cetuximal but certainly sounds like it might be a good option. The thing about the Erbitux is it has not been tried on cancers who have had it surgically removed so not as much data out there. It is believed that possibly whether or not which chemo is used it ups the cure rate to an additonal 10% if used in conjunction with radiation. so that is today, anyone else out there given the option of Erbitux and if so how was it?

byzas
Posts: 9
Joined: May 2009

I had tonsil cancer in 2007, left tonsil, stage III,it was 4cm but had not spread to the nodes. My first chemo was Cisplatin, but then I continued with Erbitux. The first treatment is over a period of two hours, that is to see if you have an allergic reaction. The following treatments were only one hour long. My only side effect was a mild breakout around my nose . Once treatment was over it cleared up completely.
I also had Amofistine injections everyday to try and save my salivary glands. I had an injection in each arm everyday before radiation and it became painful. If you know the pain of a tetanus shot, you can imagine the compounded effect of 78 injections. So it hurt, but after all the radiation I still have some saliva, which is a good thing.
Getting back to Erbitux, it had been used for other cancers, but had just been approved for head neck cancer when I took it. I was told it was less harmful to the rest of the body so I decided to take a chance since radiation is really the primary treatment. The fact that your doctor has suggested Erbitux even though you had surgery would tell me to ask yourself how well do you trust your doctor. You can read about Erbitux yourself and if you have questions ask your doctor.
I will share any of my experience with you that you want to know. Keep positive, it will work out.

souplady's picture
souplady
Posts: 10
Joined: May 2009

you said that I should question the doctor I had if he suggested the erbitux, can you explain further and your experience avout it. The doctor stated that since I was a stage 4 and stage 4 in this case does not mean it spread to other organs just that I had 4 positive nodes near the primary which makes the stage I guess. He stated that due to the stage that I should have the radiation plus the erbitux or citplastin to help assure I do not have a reoccurance....if you have futher information I would love to hear it, thanks you also mentioned something about amosfistine for slivary glands I have not heard anything about that, what is that all about?

byzas
Posts: 9
Joined: May 2009

What I meant to say was discuss the question with your Doctor because you said in your May 12 post, Erbitux had " not been tried on cancers... surgically removed".
I did not have surgery but Erbitux was suggested to me for the same reasons, less damaging to the kidneys and so forth. I had the most minimal side effects and it was successful for me. I was very grateful I used it. I have no information on whether or not it works differently if you have had surgery, although I don't understand why it would make a difference.
Amifostine is a medication that had been developed to help protect cell damage from cancer treatment. It was found to help reduce xerostomia that is caused by radiation treatment in Head and Neck cancer. When the doctors told me that I was going to receive an agressive course of radiation treatment, I was also told to expect my salivary glands to become damaged and that as a result I would no longer produce saliva. They suggested taking Amifostine, with the hope that I would save part of my saliva production. I think it worked for me, I still have saliva, although reduced, so I'm happy I took it.
Amifostine is given in two injections (one in each arm) prior to radiation. A side effect of Amifostine is nausea, so I also had to take an anti nausea medication before the injections. It was injected into the muscle and it was like the pain you would have for a tetanus shot. To me, it hurt. It was tolerable for the first few weeks, but then I just felt sore all the time because there was no recovery time. The good news is as soon as treatment was over the pain had a chance to go away.
I hope some of this information helps. You can go to www.erbitux.com and read how it actually works.
Hope you're feeling well. Talk to you again.

MattZ28
Posts: 2
Joined: Jun 2009

Hi I’m a new member and this is my first post. I had tonsil and throat cancer. I finished chemo and radiation two weeks ago. I was wondering what I should be expecting as far as healing time? I still can’t eat and have a G-tube. I had 38 treatments of radiation and 7 weeks of chemo. Any tips would be great! Thanks

Fireman
Posts: 28
Joined: Feb 2009

As with you I had tonsil cancer without being in any risk catagory. I had my tonsils removed but did not have as much dissection as you did. My surgeon loaded the area up with marcaine and I had very little pain for 2 days before the soreness crept in. It was manageable with Tylenol for me, but everyone has a different pain threshold. Knowing that what you will go through could be a rough course, not doing so would be even worse. The effects of having the cancer spread and the systems it could affect is a much worse scenario. Survivors are here because they in many different ways with many different stories and experiences, made it through the treatments and want to encourage, help, and to be honest with those who are to face what we've been through. I would encourage you to write down questions for your medical team and continue to ask the people on this site to get answers and support. We may have had different treatments, side effects, and results, but we have overcome this. Just reading some of the responses, I see that you are getting good advice. There are good people on this site who are willing to help and give you emotional support. Don't hesitate to use that. If you've never been a fighter before, you are one now and we are behind you, beside you and with you cheering you on.

byzas
Posts: 9
Joined: May 2009

This is my first post. I finished my treatment for tonsil cancer in April of 2007. I was told I was stage 3, but they did not recommend surgery, instead I had 39 radiation treatments and 7 chemos. I never smoked and am not a drinker, and had never worked with hazardous materials.
I can not address the surgery but I can address the radiation. First of all, I have to say radiation does not hurt. Usually, my treatment was one or two minutes not including the machine adjustments. It is the side effects that cause the problems. Having said that, you will get through it ! We all did ! I don't know how specific you might want me to be, but you can ask me anything you would like. I am the type of person that wants to know everything that is going to happen, but I realize not everyone wants to know everything.
My salivary glands did get damaged and I have limited saliva. I can taste everything savory, but can only taste the first few bites of sweet. So, the weight that I lost stayed off because I don't eat bread or cake or anything very starchy anymore. Actually, if I drink a lot of water I can eat anything but it's too much work and it tastes watered down so what's the point. I can't eat spicy anymore, which I use to enjoy. But, I just attended my daughter's college graduation this weekend and I'm going to my son's Master's graduation the end of this month. I am soooooooooooo Happy that the treatment worked!
It is going to be tough BUT, YOU WILL GET THROUGH IT!
I wish you the best,stay positive and I hope you keep in touch.

ljoy's picture
ljoy
Posts: 85
Joined: Dec 2007

It is now four years to the day since I was diagnosed with tonsil cancer. I currently volunteer at our local cancer treatment center I wanted to comment on the Chemotherapy. I had Cisplatin which is one of the old drugs that causes a lot of side effects in many patients. I was very sick and hospitalized after each of my three rounds of Chemo. The center here has switched to Erbitux for the very reasons you identified. The patients have very few side effects and the cure rate is the same.

Most of the cancer treatment centers operate in conjunction with the larger cancer centers of the United States (M.D. Anderson, Mayo, Sloan Kettering) just to name a few. The treatment protocols for the various types of cancer are fairly standardized but adjusted or modified to fit the individual case being treated. The standard for tonsil cancer is both chemothery and radiation. As the earlier commments indicated the primary is radiation while the chemo makes it more effective. This is the case whether you have your tonsils removed or not. In my case they were removed including tissue surrounding the right tonsil.

Besides the PEG tube you will also want to consider either a Port or a pic-line for your chemotherapy. The drugs are hard on your veins and this way you do not have to get an IV started every time you have treatment or need fluids during your treatment.

Hope this helps you. This is a great site so keep us posted on your progress and we will be here to help get you through it.

souplady's picture
souplady
Posts: 10
Joined: May 2009

Thank you for the information. There is so much to absorb and I am sure as i am everyone just wants to make the right decission to be odds are in thier favor.
I have talked to the doctor regarding the feeding tube and he thought that maybe I would not need it however even after 10 days of the surgery for the tonsil removal I am still not able to eat much due to the area still healing so if that is an indication of what is to come I wonder if it will become necessaru. the tube, what is the process of having it put in and how is it taken care of, maintianing the care and such. I already asked about pic line since my veins are not easy to deal with on usual days so I think that is a good idea.
How soon after radiation did you find difficulity with swallowing or eating? WIth the tube did it help maintain your weight? Were you able to drive yourself to and from treatments all thru treatments?
Thanks again for information
Patti

byzas
Posts: 9
Joined: May 2009

I agree, you find out you have cancer and you have to make all these decisions within such a limited amount of time.
I had radiation over a period of 8 - 8 1/2 weeks. The first two weeks I ate normally. Then I began to notice a difference and needed to eat soups or pasta, foods that would go down easily. Over time my mouth developed sores and inflammation and it became more difficult to find things that I could eat.
The radiation causes everything to dry up but the mucous part of the saliva is left, so as the inflammation increased in my mouth I found it extremely difficult to swallow. I ended up dehydrated and had to be hospitalized for almost two weeks at the end of my treatment.
I did not have a feeding tube, if I had, I probably would not have become dehydrated.
I mentioned I took Amofostine, to help save my salivary glands and I also took Kytril along with it to prevent nausea. I can't even remember the medicine I had to swish in my mouth before radiation. For me it all became exhausting and I was so fortunate to have my husband drive me back and forth every day. The ride took from 30 to 60 minutes depending on traffic. How far will you have to travel for treatment? I think it would be a good idea to arrange for someone to drive you and then see how you feel once you're in treatment. Everybody's treatment and reaction is similar but different.
This all may sound terrible and it is to a degree, but once treatment is over it begins to get better, it just takes time.

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

get a a peg tube and a port not a pic why anyone would try to make it without a peg tube i cant understand. The more food and water you can get in you the better you feel. (period)

cc
Posts: 1
Joined: May 2009

I have tonsil cancer. Had tonsils removed two weeks ago tomorrow and feeding tube inserted already. Throat was very sore the first week, but is much better now. Swallowing still hurts a little, but tolerable. Am able to eat food cut into tiny pieces so it's easier to swallow. Radiation should begin this week for 7 weeks and chemo once a week. Don't have schedule yet. I am very nervous about this because I don't know what to expect since I've been told everybody is different. Been told I'll be able to drive to the treatment center for the first two weeks, but maybe not after that. Do not have transportation lined up and it's 1 hour away. Looking into a place to stay near the treatment center for the rest of the time. Will feel better once I get this issue resolved.

TIM_WWJD
Posts: 38
Joined: Jan 2009

It has been awhile sinc eI have been here and I see we have a few new head & neck buddies. To update I started my treatment for tonsil cancer on 02/02/09 with a three cycle chemo of Cisplatin and Tax??. This was in lew of surgery to remove the tumor. It was a rough nine weeks but the chemo shrunk the tumor to the point it did not show in the CT scan in March. God was very good to me and the prayers of hundreds didn't hurt either. I started a combination of daily radiation and weekly chemo of Carboplatin (much less effects than the firt) on 04/28/09. Anyway I am halfway through my 30 radiation treatments and things are looking good so far. I am writing this to those who are just starting out. First thing is you are doing right by getting all the information you can but be carefull not to get overloaded.
Second is everyone will react differently even to the same treatment, ll you can do is get yourself prepared and be ready to fight, you must have a good attitude as this is half the battle. You need nutrition and fluids so do not hesitate with the PEG tube and it was simple to get put in I had both my PEG & PORT done on the same day. I used it one full week during the first chemo because of mouth sores and I am using it know because my throat is sore from radiation and I am hoping that healing will come faster if i don't irritate it more than needed. Remeber to keep the swolling muscles working even if you are on the PEG so they will work later. Food and fluids (Gatoraide) are the key, I feel much better when I take in 1500 CAL or more and 2 liters of fluid each day. I did have trouble with medicines, I crushed them and tried to mix them with my Gatoride or water but they don't disolve well. I found that I can mix them with apple sauce and add water to make a slurry and they seem to transfer much better. Remeber to check with your pharmisist on which pills can be crushed. Wow I am writing a novel. I hope this is helpful and it is hard work and some days are dark but the option is much worse.
Tim

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

Pretty much all of the pain killers come in liquid form (you may need to use the hospital pharmacy as not all stock them). My blood pressure pills were no longer needed as I lost so much weight. I changed from hydrocodone to oxycodone about half way through as I was taking too much Tylenol with the hydrocodone. Just squirted it into the peg tube. :)

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network