RIGHT TONSIL CANCER

I have been diagnosed with type 2b cancer on the tonsil which has affected 1 limnod at this time- they want to bombard me with chemo and radiation-is this the right treatment- they also said something about a feeding tube is this neccessary- before they do this they are giving me a full body scan to see if it is anyplace else-any information would help-going next week for scan july 18 and see doctors the 19th -thank you ryan

 

Ryan,  I am deeply sorry you have had this diagnosis.  I had tonsil cancer 17 years ago; obviously, the good news is I am still vertical.  The unfortunate news is that is has been one heck of a ride to get here.  I had 11 teeth pulled before they started the radiation due to them being in the path.  After that healed, the radiation, 2X a day, 5 days a week, for 7.5 weeks.  Lost my salivary glands, most of my taste buds, and now, 17 years later, my eppiglotis has shrunk due to the max. amount of radiation I received.  This allows particles of food and drink to travel down my trachea instead of my esophagus.  Aspiration pneumonia, had it 9X in just over two years.  Numerous hospital stays, the last of which was in October of last year when they put a feeding tube, peg tube, in my stomach and I can only eat and drink through the tube, nothing at all by mouth.  Are you depressed enough now?  Then the good news.  I am now 60 years old, I got used to not eating or drinking by mouth, have put on most of the weight I had lost, have almost perfect labs, and I am active in golf, a little tennis, riding bikes, and doing a lot of bass fishing since I have retired.  It is not easy, I suggest a strong faith and family tie, and your strong self to step forward.  If you are married, I hope you have a very caring and loving wife as I do, one who insisted I "stay around " another 20 years or so.  I hope for your sake that the regimen you have to go through is not as extensive as the one I did, but if there is anyway I can be of help, please let me know.

I will pray for you and have you in my thoughts...Cliff

Ryan,

As Cliff mentioned, I too am sorry that you have to be here searching for answers, but I am glad that you found this site.

I would like to add a few things to your questions. I had Base of Tongue cancer roughly 8 years ago. I was not given Chemo as the Doctors wanted to keep it as a back up in the event I had a recurrance of the cancer. I did have radiation which did cause me to lose all my saliva.

What I would like to point out is that the newer machines try to avoid the saliva glands when at all possible and there are medicines out now that also help with saving the saliva, when I was getting radiated, these medicines were not available at that time to me. What I am getting at is, times change in medicine and what was the procedure back 8 years ago, may not be the procedure now. My Surgeon does allot of Robotic Surgery now verses when I saw him. Less side affects for his patients.

I did have a Peg Tube as I did have part of my tongue removed and was unable to swallow for several months. So, my nutrition was in the form of cans which I put thru the Peg Tube. Some people are able to go through treatments without the PEG tube, but it can be rough. It might be better to get it and not use it, then to be in the middle of treatments, run down and then have to stop treatments to now get the Peg Tube. I had the Peg Tube removed about 2 months after my final treatment.

It is good that you are getting a full body scan to have something to compare with in the future, to make sure nothing has spread down the road.

You may want to also post over on the Head and Neck section as it appears to have more traffic there and more people may see your posts, hence, more answers.

My Best to You and Everyone Here

Hey Ryan,

Sorry you have to go thru this. I had same thing but they caught in time and I had surgery in Feb. They say they got 99% of it removed. I was given a choice Chemo+Radiation or nothing. I chose nothing. 3rd PET scan since shows negative but I still worry. If you are a candidate for the T.O.R.S. surgery, I would definately do that, as it is very successful in removing enough cancer for minimal if any chemo/radiation. You would eat puree'd food for a month at the most. (which arent that bad at all imho, I puree'd a mushroom/sausage calzone once...tasted great!) If you are not a candidate for T.O.R.S., then they probably do not want to open you up and thats the reason for the chemo/Rad. Good Luck.

PS... the PET scan is not as bad as MRI...but you may want to take some valumn or something to take the edge off if you are the least bit claustrophobic. I do. I actually never really had a problem until some nurse asked me if I was claustrophobic so now I just take it every scan.

Hello Ryan, I’m sorry you have been diagnosed with cancer.  I am in the middle of something similar.  In Mar 2012, I was diagnosed with stage 4 squamous cell carcinoma of the tonsil which has metastasize to the left lymph nodes.

I had a radical tonsillectomy (both tonsils removed) with clear margins meaning they think they got it all as evidence by the clean margins.

As I researched my treatment options I learned radiation and chemotherapy was the protocol to cure me of cancer.

I also had four teeth removed before rad/chemo because radiation weakens the bones and if I have a dental problem during rad/chemo it could become a very difficult problem (i.e. I could lose my jaw) because the bone will not heal properly.

 Following three weeks of recovery for the oral surgery (teeth removed), I had a PEG installed so I could continue to eat. 

During the early stages of this I had complications from the tonsillectomy and my throat was the worst pain ever. Well, I could not eat then and the doctors and the literature indicated I would have similar pain in the throat which may prevent me from eating or drinking even water later during radiation (they were right).

The PEG allows you to live, so go for it. I use it as the sole method for nutritional and fluids.

 I started and completed 35 radiation treatments. I finished 3 rounds of chemo. Today was the first day I did not have radiation in 8 weeksJ

The radiation burns your throat on the inside as well as the outside to kill the cancer. I take a great deal of pain med’s to manage my throat pain. I cannot eat food, it hurts about ten times more than the 1-10 scale, on the meds of not. Water burns. Coughing burns. Blowing nose burns. Anyway, I try to avoided anything that causes me pain, when possible.

Radiation is the treatment that keeps on giving, and I anticipate I will continue to have radiation burn for 2-3 more weeks then I will begin to heal.

I try to rest/sleep as much as possible.

 

The mucus in my n throat has become so thick I must use a pump to suction it out.  If you can, ask your doctor to prescribe home medical equipment. There are other mouth wash and swish and swallow solutions which may work for you.

 

I hope this helps you understand you can get through this as I have, and many others before us!

I also hope you have found a cancer support group to attend. I found mine and it is an invaluable part of my recovery. I also began to mall walk for exercise. I was told don’t do anything more than an hour a day at a fast pace. It helps reduce the fatigue, so please consider it. There are two aspects of your treatment you control and effect: Your nutrition and your fitness.

I lost my tasted buds 6 weeks ago and have had to force feed myself to stay alive (hydrate/eat or DIE). I mall walk to keep active the extent it helps.

 

I will pray for you.

 

Sincerely,

 

Ken

On Jul 10, 2012 7:32 PM lryan wrote:

I have been diagnosed with type 2b cancer on the tonsil which has affected 1 limnod at this time- they want to bombard me with chemo and radiation-is this the right treatment- they also said something about a feeding tube is this neccessary- before they do this they are giving me a full body scan to see if it is anyplace else-any information would help-going next week for scan july 18 and see doctors the 19th -thank you ryan

 

I have much better news. Had stage four tonsil cancer and am six months post treatment. Not fun but not so horrible. No peg. Chemo followed by chemo/ rad. Drank boost to keep weight. I am now back to 95%. Just got off a 20 mile bike ride. Taste back to 90%. Saliva not greatest but sip water and beer lots. Best luck. Its not so bad.

Ryan,

Sorry to read your news. As you've seen by now, folks respond differently to treatments, and by the nature of cancer and how we approach it, treatments can vary. It may be worth visiting a second cancer center/doctor to get another opinion, if for no other reason than to feel better about your choice.

Like Ken, I had a stage IV tonsil tumor with spreading to the right lymph nodes. I had to have the now-usual 35 radiation plus 3 chemo treatments. That was 3 years ago, and so far, all is clear. I was mentoring a woman of 66 years who had a similar diagnosis, although I do not know the stage. She elected to have surgery followed by radiation but no chemo. They did a PET scan at 90 days and it was clear (that seems early to me, but I am NOT a doctor.....). At any rate, again, different ways to go on this.

PEG tube: I am a HUGE fan of these! I would have died without mine. In the end, I hated to give it up, b/c I had learned to use it while riding in a vehicle even on a bumpy road, in airports, etc. It was so easy once I adjusted. I used a medical formula (I'm not a big fan of the high sugar content in OTC offerings like Boost/Ensure, but many folks have used them successfully). It's an easy procedure, to have a PEG (also called GI) tube installed. I even had mine replaced b/c I kept it for 15 months, and I wore out the first one. I was able to begin eating after about 4 months, but it was so gradual that the tube, again, saved my buns. I agree with the comment that's it'd be better to have it and not need it, vs. needing it later. By the time I needed it, I was so weak and sick....... I wish my doctors had not waited. But I think they do so to avoid another procedure if possible.

Not to overburden you, but this is a game-changer. So do some reading, thinking, talking, etc. Your life will be different afterwards - but in many ways, for the better. I continue to struggle with various bits of "collateral damage", but, with the support of lots of friends and my fiance, I have come to appreciate life in a different way. Although eating/swallowing is not the same, and may never be, and the neuropathy (from the chemo) is a bit annoying, I am back to many of my old habits, which includes a lot of traveling, working out in the woods and fields for days, away from home, playing my guitars, etc. But, I do these things with a different point of view, and I must say, although I wasn't looking for a "new me" and resisted the first year, I'm now rather impressed by it all.

Biggest mistake? Besides not getting that GI tube right away..... it was not using the services of the Center, especially the support group. I'm now in it, but I did not begin going until I was into my 3rd year post treatment. I wish I had started right away, and also gone to some of the prep classes. That was a real "bury my head in the sand" approach I took, which I now regret. So I agree with the suggestions: get some support. A little goes a long way.

And while it may sound cliche, find something that gives you strength, and use it. I study birds, and I love to watch them. They give me joy and hope like nothing else. So I set myself up by the kitchen double window, with lots of bird feeders outside. I sat in that chair nearly full time for almost a year. I had my laptop nearby, but for much of my time, I would just stare out that big window, and watch the many birds that would come and go, all day long. Seeing them so alive kept me going, somehow. I kept a bunch of CD's and a portable player with headphones nearby too. That way I could listen at any time, without bothering Kathy, and I really liked the feeling/sound of the headphones.

And some final good words: my salivary glands returned to about 2/3 functional. As one noted, the new technology is really pretty good for minimizing the collateral damages. The taste buds do return, it just takes time. I've always been a food label reader and hobbiest-nutrionist and cook, but this forced me to REALLY pay attention, and that has been really cool. I've learned even more, and Kathy and I enjoy a different suite of foods and recipes. So, maybe another cliche, but this whole thing brought us to doing some good things that we may not have done otherwise, and in a very enjoyable way.

I hope your scans bring you good news, and you have or find the emotional support to get you through this. And, as already mentioned, glad you found this site when you did; it's a great resource.

John

Ryan, just read your letter.  I also had right tonsil cancer but mine was Stage 3/4, a bit more advanced than yours, and it was attached to other things in my mouth.  I had surgery where, along with the tonsil, I lost part of my jawbone, part of my tongue and part of my soft palette (the dangly bit you see when you look in the mirror) followed by chemo/radiation. If your doctors are suggesting chemo/radiation it indicates that the cancer is only at the tonsil (?) and you do not need surgery.  Chemo is easy, Radiation burns your skin and the inside of your mouth and will give you a hard time (see the other responses) but you will get over it.  Sometimes it is hard to deal with but a positive attitude helps a lot.  Radiation has quite damaging side effects and the side effects are unpleasant but they are TEMPORARY!  Surgery is permanent.  Take second opinions by all means but act quickly before this thing gets bigger.  I have had a feeding tube since hospital, I don't like it but it keeps my health/weight up so I am not complaining.  If you can wean yourself off the tube, then it simply removed.  My procedure was about 3 years ago and I wrote a blog about it at ianstonsilcancer.blogspot.com   I have not updated it for a while.  Don't worry too much, you can do this.

Good luck. 

Ian 

Ryan, I'm sure it's a scary time for you. I know because I was where you are in January 2010. First I want to say many things have changed in the last 17 years. I was 55 when I was diagnosed with cancer. It started in the left tonsil and spread to 2 lymph nodes. I never smoked or used tobacco products and rarely drank.

I know the sound of a feeding tube sounds ominous, however, it's not nearly as bad as that. I strongly recomend it. I cannot stress enough the importance of staying hydrated. The worst of the whole treatment period was when I let myself get dehydrated. I ended up in the hospital with Iv's for a day. Anyway, at some point you probably won't feel like, or won't be able to eat(and the radiation kills your taste buds, so you won't want to). It's important to stay fed to stay healthy and it's much easier to maintain an eating schedule with the tube.

Radiation: I thought it would be easier than the chemo, but I was wrong. I did find taking a lorazapam about a half hour before treatment helped considerably. I actually started falling asleep through some of the sessions. Drink warm tea with honey to coat the inside of your throat before treatment. Also, I took a cd and listened to music during treatment to help me relax. Moisturize the area they radiate, particularly the neck. There will come a point where you will burn and maybe blister. Take preventive measures. Start from the beginning before you even feel anything and do it consistently.

Chemo: Wasn't as bad as I expected. Don't get me wrong, it wasn't a picnic, but I guess I expected worse. There was nausea, but they make great medications to help with that. I was never the type to even take an aspirin, but it's foolish not to take advantage of anything that helps.

Side affects:  Dry mouth, I'm back to about 50% but I always have a water bottle with me. The radiation also destroyed my thyroid. Make sure you're tested after treatment. I wasn't for a year, then I found out. I'll be on medication daily for the rest of my life. Hearing- I've had some hearing loss from the chemo and I also will have crickets/hissing in my head for the rest of my life. Very annoying. But I keep soft music on at night and I can sleep fine. Other than these little reminders, and the scar on my stomach, I've returned to my normal life.

I'm not going to lie to you, it's a rough road, but it's beatable. Keep in mind, about 30 days after your treatment ends, you'll wake up and feel a little better than the day before. And the next day will be a little better than that. And each day will go like that. And before you know it, you'll be giving someone else the benefit of your experiences and some hope of their own.

If you have any questions about anything, please email me at  

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Good luck my friend, you can do this.

7/24/12

You've gotten a lot of response. Ask questions as you go thru this. 1000's have had this cancer, 20 people responde here.

As soemoene sle posted, get teh feeding tube, after 2 weeks you'll have a hard time esting. You'll probably get a port in your chest for chemi injection, its all temporary. tube will keep you from losing weight.

This is the worst treatment to get.

it is the most curable.

Keep your chin up. get a calanendat, mark off 35 weeks till teh end of treatment.

Mark off 3 more weeks=it gets WORSE after treatment.

Mark off another 4 weeks, you start to feel normal.

Mark off 3 months, you feel your self again, but still skinny.

Mark off a year total, life is good.

 

if you have disability insurance, make a claim, you may not be able to work for a while.

Good Luck

David