Hello all,

I found out March 5 I have a squamous cell carcinoma in my left tonsil. The primary is actually quite small (pea to olive size), but I now have two lymph nodes on the left neck involved. I live in S. Cal. and am seaking treatment at Cedars-Sinai. I am supposed to begin radiation and chemo next week (April 2-3). I have good teeth and excellent health overall so I feel strong and know I can beat this. Mostly I am concerned about the after effects (dry mouth, etc.). Apparently only half of my paratoid gland will be in the radiation field so I amy well retain 50%. I just do not know at this point. My Oncologist states that I will not have to have a neck dissection at the end of all this, but my radiation Oncologist is strongly suggesting a limited dissection. At this point with my life upside down I do not know what to do other than proceed the way I have been and fight the good fight!

I'd like to hear from anyone that wants to talk.
Thanks, M.C.

Welcome to OCF. I hope that your treatment goes As you go through this process, things arise that you need to ask questions about, you may just wish to vent, or you may be looking for moral support. You have found a group of very giving people here who will be willing to help you when those times arrive. As to the neck dissection, some of us have had them after radiation, some not. Your doctors really won't know either until after the treatments end and new diagnostic films give them an idea of what's left, if anything. Some like to remove the nodes no matter what, just to be sure there is nothing hiding there. You are about to begin a tough battle, but it is winnable and there are lots of us here to prove it. We'll all be pulling for you.

Hi M.C., Since you are in overall good health - you should very well be able to tolerate the side effects of the treatment they are going to give you. It's not easy - and not pleasant - but there are people who were not in overall good health that are handling it - my husband being one of them. He was diagnosed with squamous cell carcinoma at the base of the tongue. He went through 2 weeks chemo and about 2 1/2 months of radiation. It did quite a number on him! Yes - he had (and still has) mouth sores, and dry mouth is a definite and constant problem - but overall he is managing that. He went for the modified radical neck dissection surgery on 2/6/03 - and right now - he is having quite a problem with the swelling/inflammation from it. My husband is 54 years old - and before all this started, he also has been dealing with type II diabetes, peripheral neuropathy, carpal tunnel syndrome, digestive disorders and was taking 17 pills a day for these and other ailments. His surgeon HIGHLY recommended having the surgery - in fact, there was never any disagreement between him and my husband's radiation oncologist. The good news is after his surgery - the doctor said he was "cancer free"! This by no means is a license to forget about this disease - we are both well aware of the possibility of re-occurance - but the surgery in my opinion is just an added measure to help combat and stop this awful disease in it's tracks. Naturally, I can't speak for you and your case - but perhaps at a later time, you and your doctors will have a better picture of what to do after the other treatment(s) are done. Good luck and keep us informed.

Hi M.C.
I had stage III, SCC, no mets, in the right tonsil, went through 2 Cisplatin Chemo and 33 IMRT radiation treatments and finished up 8 days ago. The doctors told me that the surgery would take over 12 hours and the morbidity rate would be higher and they would have to radiate everything anyway, so I went with just the radiation/chemo. At this point they're telling me that the tumor is completely disolved. It doesn't show up on the CT's. So now I'm just recovering from the treatment. Radiation/chemo is no piece of cake. It has been difficult at times and I'm glad it's over with. There is a lot of good information on the OCF site about IMRT and different treatment options. I convinced my doctor to switch to IMRT after the XRT treatment center called me to schedule so it's never to late to change your mind. Learn all you can - you really have to be your own advocate. Pray for wisdom to make the right choices. Remember to breath and take it one day at a time. A positive attitude will help tremendously. You can do this.

Hello MC....
I am alittle over 3 months since my last radiation. Dec.19th to be exact. I was to have 36 rad treatments, but turned out to have 35 (the doc decided to combine the last two)and 7 chemo treatments(every wednesday)I had right tonsil S.C.C. that had metastasized to a lympnoid in my right neck. The lympnoid was removed along with four others (that were not cancer)and both my tonsils(two different operations).... It was TOUGH....But I am a SURVIVOR !! I lost 35 lbs but I was at 240lbs so I could afford it...I am just starting to get some saliva back (which is fantastic)but I'm still very dry, and I am tasting about 40% of the food(which Iam very thankful for)My Radiation Doc says I should get close to 85% of saliva and taste back but it is a very slow process. So What I have to say to you is eat alot now and savor the taste and enjoy the saliva in your mouth because it will go away....but the beautiful thing is that it will return!!! It Just seems like forever. Good Luck With Your Treatment we know what you feeling.

Hello M.C.
Finding out you have cancer can be very scary, I myself have just gone through everything for my cancer. It is the same as yours, I was diagnosed Nov. 5 2002 with SCC of the left tonsil with multiple lymph nodes on my left and right neck. One node was 7 cm x 4 cm large. I have gone through 3 treatments of Chemo and 35 Radiation treatments to all 4 zones of my neck starting on Dec 29 2002 finished on the 15th of Feb. 2003 The toughest part is the last weeks of treatment and the first month afterwards. I have lost all of my saliva and 60% taste but it is no big deal, now with a little water I can eat almost anything but its going to take a while longer because I still get a little sore if I swallow things to big or to dry. But good news is my taste is coming back 90% now. I am going for my MRI on April 11 2003 to see if I might have to have a radical or modified neck dissection, hopefully not but why go this far and then not get it all? I have a peg tube since my second week of treatment I suggest you get one to as I lost 40lbs. it's a tough haul but you will get through it!! If you have any Questions feel free to ask or search my posts as I have been logging my progress a little.
Best wishes
Ray

The issue of "dissect or not to dissect" seems clearly to be one of hot debate nationally and the ambigious zone is vast depending on who you speak to in the surgical versus radiation oncology field.

My fiance, Dave, found out he had SCC of the right tonsil with one lymph node involved in August. We made it our mission to interview and obtain opinions from the following people before deciding how to proceed:

3 ENT/head & neck surgeons (One of whom was also a plastic surgeon and one who does research on head & neck ca)
1 radiation oncologist
1 hematologist/oncologist

We tossed, turned,swore,agonized, and compared their views to the point where we even brought up controversial information with each of them just to get the response. If you have seen any of our other posts, you have noticed that Dave and I have decided that we look like bright enough people to sift through and get to the point where choices become ours and we agree that our comfort level is paramount in the process.Sometimes, this involved ruffling a few feathers but we are "politely irreverent" to the point where the medical staff now sees us as inseparable team and that's just the way we like things.

We discovered great disparity among the opinions but ended up choosing to go with the removal of tumor & tonsil, lymph node dissection on the affected side, flap graft from arm to palate(thsi also involved a donor site on Dave's leg), followed by a full course of bilateral radiation.The surgery lasted 14 hours due to the graft but Dave did come through it beautifully and was a healthy 48 year old going in which is key.

The surgery was a piece of cake compared to radiation even with a trach for about 10 days.

We also explored the chemo-radiation only option but deferred entering a study at a world famous hospital here in Boston because we needed the comfort of a tried and true method.We also learned that some folkd in the field were a bit more interested in statistical numbers than people and it is vital to inquire about your practitioners' philosophies about cure.

We were also lucky to have a surgeon who is a national expert in head and neck surgery and this is KEY and you should check that out bigtime because technique of dissection and cosmetic result, although not nearly in the same category as cure, is important.

If you want to hear more about the process of recovering from neck dissection feel free to fire away your questions and we'll do the best we can to give info.

Best,

Kim & Dave

Hi M.C.
I too had the same diagnosis as you (but in the right tonsil). when I went in for sugery I did not know (nor the doctors) what kind of cancer I had. Only that cancer cells were found in an enlarged lymph node. My doctor removed my tonsil as a guess because no primary tumor was seen. It turned out his guess was correct and he commenced with a radical neck dissection. Since I was still asleep I never had any time to learn about my surgical options. I will strongly suggest you learn ALL you can about the side affects of each variation of surgery (there are many variations) and of course the expected sucess rate for each. The side effects of the complete radical neck dissection can be significant. My shoulder will probably be a constant source of pain for the rest of my life (this is because of a nerve that is in the same path as a large number of lymph nodes) rather than carefully seperating the nerve thay just cut the whole works out. Since I was relatively young at 40 and since I am optimistic about my cure, I might have to live with my bad shoulder for another 40 years! Naturally If that pain is necessary to live then it's not so bad. If I could have done it differently and survive without the pain that would have been better.

Like wise what ever you can do to protect your saliva is worth doing. Not having much is for me the very worst side effect (though thankfully just enough has come back so that I can talk without a constant supply of water). Once again if it is necessary to survive then so be it, but explore every option with all your Doc's and call in for third opinions. This is something you will have to live with. Make sure it is not just because it is convenient for the Doc. I wish I could do mine differently but that Isn't going to happen.

The effects on teeth is a topic I haven't seen (nor looked for) on this site. The past standard was for removal of all teeth in the radiation field still is if they are in poor condition. I have all of my teeth including wisdom teeth . My dentist is a friend and I asked him to seal all of my teeth prior to getting radiation. I brush gently for very long periods (sometimes 5 to 10 minutes) and have had NO problems post radiation. I do use Biotene mouthwash before bed and that seems to help

P.S. It might seem like I don't have faith in my doctors or treatment. That is not the case! The fact that I am still here is proof of their expertise. I thank them regularly for what they have done. My comments are in the area of quality of life and anything you can do to enhance good quality of life post treatment is worth doing.)