MY HUSBAND IS 43 AND WAS DIAGNOSED IN DECEMBER 2005 WITH RIGHT TONSIL CANCER. HE PRESENTED WITH LARGE LYMPH NODE ON THE RIGHT SIDE. HAS TONSILECTOMY 12-05-05, AND RT MODIFIED NECK 12-30-05. hE WILL START RADIATION THIS WEEK,STANDARD RADIATION ON THE RT AND IMRT ON THE LEFT IN HOPES OF SAVING LT PARODID.I HAVE TO SAY I AM A LITTLE ANGRY ABOUT THE DELAY IN TREATMENT, HE HAD TO WAIT 20 ADDITIONAL DAYS TO GET NECK DISECTION BECAUSE IT WAS A BUSY TIME OF THE YEAR(KIDS AVIND ELECTIVE TOSILECTOMIES OVER WINTER BREAK) WE WERE TOLD THAT THIS DELAY WOULD NOT HARM HIM, HOWEVER NOW POST BIOPSY WE FIND THAT WHAT WE WERE TOLD WAS 1 NODE IS 5, AND INSTEAD OF EARLY STAGE 3 ,HE IS NOW A STAGE 4. WE WERE TOLD BY THE RADIOLGY ONCOLOGIST THAT THIS IS A VERY AGGRESIVE CANCER IN YOUNG PEOPLE WITH NO HISTORY OF SMOKING OR DRINKING.(I TOLD HER THAT I HAD READ ABOUT HPV16 AND THAT THESE PEOPLE HAVE A BETTER PROGNOSIS, SHE SAID THE STUDIES ARE EARLY). RADIATION WITH CISPLTIN WILL START THIS WEEK, FOLLOWED BY HIGH DOSE TAXOL/CARBO. THEY DID NOT WANT TO USE IMRT ON AFFECTED SIDE FOR FEAR OF MISSING SOME CELLS. THE RADIOLOGY ONCOLOGIST TOLD ME THAT HIS CHANCES ARE 50/50, I HAVE NOT TOLD HIM,SHOULD I? THE LAST HE KNEW HIS CHANCES WERE 80% CURE AND HE HAD A SAD LOOK WHEN THE ENT TOLD HIM THIS.HE HAS NOT DONE ANY READING ON THE INTERNET ON THIS DISEASE.i AM A NURSE AND WHEN I STARTED READING ABOUT THE PROGNOSIS I CRIED FOR WEEKS.IS IT BETTER TO KNOW, HE IS A VERY STRONG MAN,BUT HE STILL TELLS EVERYONE THAT IT WAS CAUGHT EARLY.HE DID GET DIAGNOSED WITHIN A WEEK OF SYMPTOMS,BUT THEN TREATMENT HAS BEEN DELAYED.I WOULD WANT TO KNOW, BUT HE SEEMS CONTENT BEING IN THE DARK. THE DENTIST DID NOT MENTION TOOTH GUARDS, WHAT ARE THESE? HOW DO WE GET THEM? ARE THER ANY LONG TERM SURVIVORS OUT THERE,IF SO I WOULD LOVE TO HEAR FROM YOU.
THANK YOU,

Hi Nancy and welcome to the forum. I too am a right tonsil cancer survivor and had advanced staging. I had no surgery - it was deemed to put me at a higher risk because of the extensive aspect of it and they thought that IMRT and Cisplatin would be equally as effective. I had no lymph node involvement. My MO showed me a data sheet that showed me a 5 year survival rate at 38%, however my RO stated 80% - I'll take her numbers! So far so good.

If he is keeping his (highly recommended - unless they and/or the gums are in bad shape) he should be fitted for dental trays as soon as possible for at home floride treatments. I wouldn't let them pull my teeth.

Even being on the fast track it was still almost 2 months from Dx to start of Tx. When he gets to the "watchful waiting" stage (post Tx) they consider 2 months to be within a reasonable window to catch abnormalities before they get out of control.

He is the first I have heard of that is getting 2 different types of radiation. It sounds reasonable but will the side scatter from the XRT undo the benefit of the IMRT? I would ask the RO.

Is he at a CCC?

Nan - my husband has tonsil cancer and we experienced a lot of the same reactions as you and your husband. I did tons of research and cried a lot (until I realized that was not helping anyone)while John more or less withdrew and relied on me for info when he had a question.

John didn't have any surgery since it had already advanced into his neck and they felt they had a good shot of getting it with combined the chemo & radiation which he would have to get anyway at his stage. They told us stage III/IV at diagnosis but we also thought that after waiting 6 weeks for treatment to begin that it had grown.

We are at large cancer hospital in a large Canadian city so they have all the specialists in one place. My husband goes to the head of dental oncology there and that is who fitted him with the tooth guards for the daily fluoride gel treatment.

The ENT/surgeon who we saw first and who instantly made the accurate provisional diagnosis (before scans) said they would "treat to cure" if tests revealed that it hadn't spread to lungs or brain. A couple of weeks later the radiation oncologist said they had a 70% chance of eradicating it with the radition/chemo.

Who knows what all these numbers mean for John himself (or the numbers you have heard for your husband as an individual) ? Some people have extensive local cancers and lots of dire signs and they are still with us 5 years out. Heartbreakingly, some aren't. John was happy with the 70% chance of getting rid of it but worries - as does everyone touched by this disease- what it means for the future.

Right now, for me, the percentages of likelihoods are pretty meaningless. Two weeks ago our medical oncologist said he was in a "high risk group". We didn't ask for clarification. We remain vigilant for things we can get help with but, for us, anyway, it's part doing the heavy medical thing and part fingers crossed/knock on wood.

As Gary's post indicated, the doctors themselves often give you different numbers/impressions. If you talk to your husband about numbers you might want to share that perspective with him.

This will be a very, very tough time for you both. Please post whenever you have questions. I have found this site to be a tremendous help.

Mary

Hi Nancy,
I hope your worry and anger will reduce a bit after reading my post because my tonsil cancer diagnosed 4 years ago had also reached a very advanced stage and I consider myself a winner of the tough battle. My ignorance about this type of cancer (I never knew that cancer could develop in our tonsils) and doctors' misdiagnosis resulted in the late stage. Diagnosis was confirmed on 27/9/01 and the concurrent chemo-radiation treatment began on 1/11/01. During the waiting period, I was not sure if the huge tumor on the lymh node was still growing or not but there was nothing I could do to shorten the waiting time.Nor did I make any research about this type of cancer because at that time I was still on my full time job before treatment. I focused more on my job than the cancer itself. Moreover, I had full trust on my doctors and relied on their professional knowledge and experience to give me the best treatment. I only knew that my 5 year survival rate could be less than 50% but I didn't care much about prognosis. I just fought with will power and determination to win the battle. Support from my husband and family was very important throughout the whole process. I didn't have any surgery and had 4 rounds of cisplatin and 48 sessions of traditional radiation. For over 4 years I have been in remission and am enjoying my life now. So don't worry. You are welcome to email me if you want to hear more about my story.

Karen

Nancy, while this is of no medical value whatsoever- I will tell you to get Strong, Tought and start fighting like Hell. Amy

Nancy, I can spell "TOUGH" How are you doing?

I would like to thank everyone for your support. Robert starts radiation in the morning. He will get sub- q ethyol 1 hour before. I see that many of you had imrt. The radiology oncologist said that she did not recommend the imrt..she wants to cover the entire area, and says that she should wants to get the tonsil bed. I see that many of the scc of the tonsil on this site had imrt and I am worried that this oncologist is not up to date with the larger cancer centers.We are going to a cancer treatment center, however our town is not a large city. I would hate to push the issue and then have the cancer show up at a later date, I would have major guilt.Robert seems content with her rational,however he has not read what life post radiation may be like if he ends up without saliva.
Nancy

Hi Nancy,

Hopefully, he can tolerate the ethyol. I was able to, many cannot. it is supposed to protect the glands. My saliva is pretty good now, one year out. I had IMRT for base of tongue and two lymph nodes. I also had 5FU, Cisplatin, Taxol and some other chemos. Does he have a feeding tube? he will need one. the dental trays are important. they can be fitted by your dentist. Normally $500. With the solution, they help prevent tooth decay. i have had no tooth problems since I had my cancer.

I would suggest going to a larger, more up-to-date cancer center. Do they do IMRT at your center? Post life without saliva is not fun.

Steve Daib

Nancy,

If you have some questions about the skill level at your local cancer center, it may make sense to get another opinion before the radiation starts. However, it may turn out that your husband's RO has good reasons for her approach.

I didn't even have the option of IMRT, as it wasn't around when I had radiation (nor was the use of ethyol to help preserve saliva). While I experienced significant dry mouth problems for quite some time afterward, my salivary function has in fact returned far more than I ever thought it would. I can eat virtually anything I want, and I rarely find myself needing to have a water supply close at hand. (There are times when I wake up at night and find that I've been drooling on the pillow!)

A couple of weeks ago I had my annual followup visit with my RO (at a major cancer center in Boston), and I asked him how IMRT has changed his practice. He said it is extremely valuable and he uses it a great deal, but there are still some instances where it doesn't seem like the right approach. One thing to bear in mind with regard to IMRT is that, because of the precision required, you really want those involved in the process to have extensive experience with it so there's no doubt about what they're targeting and the fact that they're actually hitting it.

I hope you can get the level of assurance you need about Robert's treatment program before it gets under way.

Cathy

Hello Nancy,

Welcome to The Oral Cancer Foundation! You won't find a more informative site on oral cancer than this one. Your fears and questions are normal.
The numbers of survival mean nothing to you. He will either make it or not. As was posted earlier some stage 1 & 2 lose the battle and some stage 3 & 4 beat it. There is no logic to this horrible diaease.
I also had a stage 4 tonsil cancer and am coming up on three years.
Ask any question you can think of and someone with similier treatment will respond. You can also use the search engine at the top of the page to read the older postings. Just about any thing you can think of will have been discussed in the past.

Best of luck as your husband starts his journey to recovery.

Danny Boy