Hi everybody, get well and stay well!

I'm new here. On June 9 2003 after Fine Needle biopsy of my enlarged lymph node on my right side of the neck I was told my diagnosis - squamous cell carcinoma. Since then I had CT, PET and extencive biopsies with full anestesia. Diagnosis confirmed, primary site found in right inferior tonsil fold.

Regarding treatment, I was given choises - it's good or bad for me -I don't know. One of them - surgery 14 hours long(microvascular free flap)with or without RT after. Second choise - forgo surgery and go straight to RT.
Could any of you who had to face this kind of decision give me some info.

Needless to say, I'm scared. So my wife is posting for me.

P.S. what are reactions after lyph nodes are removed

Than k you

Les sorry to hear about your diagnosis
As you may know I was diagnosed with stage 4B on Nov 5 2002 left tonsil tumor of 2 cm with neck node of 7 x 5 cm I underwent 7 weeks of radiation and 3 treatments of Chemo 1 every three weeks Surgery may still happen I am going to see the surgeon this Friday July 11 It is a long road but you will get down it. Don

Here is another perspective, Scribe. My tumor was not tonsil, but back where the wisdom tooth would have been. I opted for surgical excision, with a graft, and modified radical neck dissection. When that healed, I did 7 weeks of radiation with concurrent chemo, for which I asked. My feeling was that I wanted to do everything possible to eliminate the cancer the first time through. None of it is fun, but as part of the big picture, it is a small amount of time out of your life. Treatment ended last August and I have been going full steam ahead just as I was BC for the best part of a year now. After lymph node removal, there is little or no pain because of the numbness, and while there is great swelling from lymph with no place to go, that gradually recedes. More than a year from my surgery, I only am aware of it at the end of a long day when I am quite tired. Neck dissection was explained in good detail just recently. Look for posts by Fr. Mike when he asked the same question. I know this is a very scary time for you and your family, but know it is something you can do, one day at a time. Also know that any statistics you may run across with regard to survival are just numbers. The only statistic that matters is you. This is a fight you can win, so get ready to head into battle. It is my position that the better informed one is, the easier things are, so ask any and all questions you have, and those of us who have gone before you will endeavor to answer them all. As Raymond advised, the idea of a PEG tube for feeding, water, and medication is a scary deal, but it could not only make treatment easier for you, it could save your life. You may not be able to take food or water or meds by mouth for a while, and you need all to heal from the assault on your body. Those of us who had them still lost weght, and if I had lost more, that would have created additional medical problems. (Can you tell that is kind of a soap box issue with me?) As you read the posts here, know that everyone is different, and reacts differently to the same treatments. What may have been a trial for someone may be easier for you. Now take a deep breath and never foget that there are many, many of us who were where you are now, who are doing just fine.
Joanna

Hi scribe,
Sorry to welcome you on board but I hope your doubts can be clarified here. Like Raymond I was diagnosed with stage 4B tonsil cancer (T2N3M0) almost two years ago. I was offered two options: Surgery then RT/Chemo, RT/Chemo then surgery. The team of doctors finally decided on the second option since surgery involved a rather large area of mouth and neck which might very likely damage my voice which was very essential for my teaching career. I undertook 48 RT and 4 Cisplatin concurrently. Thank God surgery was not necessary since follow up MRI and CT scan confirmed I was in remission. I lost about 16 pounds but I had never had a feeding tube and managed to eat semi fluid a month post treatment. Seven months after treatment, I was back to my full time job until now. Life is normal if not for the very dry mouth and loss of taste. I was/am not a particulary strong woman and so if I could surpass the hurdles, why can't you? Best of luck,

Karen stage 4 tonsil cancer diagnosed in 9/01.

You don't mention where you are thinking of getting your treatment protocol determined. You are right next to one of the world's finest head and neck cancer centers, Memorial Sloan Kettering. I would give them a shot since they are consistently rated either one or two in the whole world for this many years running now.

I too had tonsilar SCC with bilateral neck mets. I was treated with radiation first and then a unilateral neck dissection. I

My husband was diagnoised with tonsil/tongue/soft palate cancer, stage 3. He went through a tumor board and surgery was suggested as the first course of action and RT six weeks afterwards. He had the surgery Feb. 11, 2003. It was a major surgery involving tonsil, some of the base of his tongue, half of his soft palate removed. A flap was made from the skin of his forearm and his right jaw bone was reconstructed with bone from his hip. The surgery went well and RT was followed after six weeks. Other than having a NG tube following surgery for three weeks, that was removed and he did not have a peg tube. He did lose a lot of weight but has managed to swallow all the nutrition he needed. He is now doing okay with some soft/blended foods but relies on Ensure and other protein drinks to maintain his weight. As the caretaker I had wished many times that he had a peg tube so I did not worry as much but he was determined and so far so good....We still have a long ways to go and hoping his first PET Scan will be free of cancer. We are not sure if surgery was the way to go but we put our faith in our doctors. We had to act so quickly with treatment we did not have a lot of time to investigate. Now through this forum I see different opinions and treatments. If you have the time, do seek all the alternatives and make your choice. Good luck to you and keep the faith.
Becky

Hi Scribe,
I had exactly the same decision to make and I went with IMRT and Cisplatin. It was tough but so far so good. I am 108 days out from my last radiation treatment and slowly getting better. The doctors assured me that the odds were actually slightly better with the non surgical route in my case. I did have a fairly unusual tumor, in that it was a polyp and although fairly large, had remained "moderately well differentiated" and "focally invasive", which meant it was pretty much contained in one spot. You will need to weigh all of these things out with your radiation oncologist and head & neck surgeon. I would always recommend the path that will give you the best outcome. My Head & Neck surgeon was the one who made the recommedation to go with IMRT & chemo. One major difference was I had no lymph node involvement although certain lymph nodes were specifically targeted by the radiation oncologist (probably as a precautionary measure). Another factor that I had, was that if I had the surgery, I would have radiation anyway. Talk to your doctors again, take good notes, get second opinions. Pray for wisdom to make the right choices.

Like Karen, I didn't get a feeding tube either, but I lost 60 lbs. So in hindsite I will always second guess my wisdom of not doing so. Most folks say here that the feeding tube is not a big deal and can help you maintain your weight, facilitate taking meds and enhance the healing process.

I was pretty scared too (I passed out when I got the Dx - in the exam chair at the ENT!) I know how THAT is! They gave me a script for Zanax which helped a lot with the anxiety.

Hello everybody

thank you very much for your prompt and extensive replies. I feel stronger with your support.

Just came back from the meeting with my cancer board an New York Eye and Ear hospital. My insurance doesn't cover MSKCC and neither does my income, but NYEE is a very reputable institution too. They know it all about the stuff above the shoulders.
I'm very confident with my surgeon and radiation oncologist. They both were trained/worked at MSKCC for a long time.
My problem is, that both of them offer the same outcome probabilities, which are quite good, with either treatment protocol. I have to choose.

one way is surgery (14 hours, free flap, unilateral neck dessection for lymph nodes removal, cutting through lower jaw bone). Seven days in hospital, which is only 15 min from my home. Based on surgery findings unilateral RT might or might not be needed.

Second way - unilateral RT for 6-8 weeks

Both doctors say that I am in the "gray area", where both protocols are legitimate. Of cource if it was them each would choose his own specialty.

I'm just a patient. How can I make my choise.
(I am leening towards radiation, because I feel I'll be more in control.)

I'm going for second opinion to Yale next Monday.

Any thoughts? Thank you!

When they presented the surgery option to me, they informed me that my quality of life would be impacted by it. I would never be able to swallow normally again as the flap was only there to fill in the space, not be a functional muscle. They also stated that due to the length of the operation (they predicted 14 hrs, same as you), the risk of infection was higher and that the actual morbidity would be slightly increased. And then the fact that everything would be radiated anyway (possibly damaging some of the surgical areas and flap)- they all agreed that radiation and chemo was the best path with the least risk - for me. I would probably be asking about long term quality of life issues with the surgery. My head and neck surgeon was the one who recommended against surgery. Very tough decisions to make. And remember, as close as our conditions are I had no lymph node involvement and you do so that has to factor in.

Gary, was a neck dissection part of your treatment? If not, I am confused about how the doctors make the determination about lymph node involvement. In my husbands case, a second lymph node was discovered by pathology after neck dissection to have cancer cells, but it was not evident by any other means...palpitating or CT or even PET scan. This is something I have been wondering about. Thanks in advance if you (or anyone else) shed any light.

Anita

Anita, in my case neck dissection was not part of my treatment, either. By using a fine needle biopsy the ENT doctor could already determine the cancerous lymph node involvement. The size and shape of it (actually I had two much enlarged lymph nodes)could be confirmed by MRI and CT scan. Both my tonsil and lymph nodes responded very well to radiation and chemo and they shrank significantly ( especially the tonsil) after the first two weeks. My oncologist told me two months post treatment that surgery was not necessary.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Anita,
A neck disection was NOT part of my treatment. There was no surgery at all. The lymph node involvement was determined by: Touch (palpation by MANY different doctors), MRI, CT, and P.E.T. scan. They didn't find anything over 1 cm. And like Karen they blasted that one with radiation and shrank it to nothing. The radiation oncologist also mentioned that there were other areas they were targeting also but didn't go into specifics. They also modified the treatment plan at the midpoint because the tumor melted so rapidly.

Other ways that they Dx lymph node involvement is post analysis after surgical removal and fine needle biopsy.

That's why I stated earlier that you have tough choices to make.

And then there is always "salvage surgery" in case something shows up later, but so far all my scans and exams have been "uneventful" (my new favorite word).

UNEVENTFUL indeed!

Do the most and best in fighting this thing. Leave NO stone unturned, leave NO option aside. Fight it every way and every moment. If one will kill it, do two.

Have I made my point!

Yes, Mark, you have made your point and I couldn't agree more. Offered sharp knives, evil death rays, and strong poisons, I said YES! to all of them and have not regretted it for a moment, because my life is happy and good and I have plans that involve the future. Which is not to say a conservative approach might not be a good choice for someone else. For me, however, I want the whole nine yards!
Joanna who survived poison, let alone cancer (grin)

i too became a cutthroat who was then cooked and poisoned. the easiest part was the surgery. the side effects were there from the beginning and got better as time went on, unlike the side effects from the chemo and rad that snuck up on me and got worse.

i say fight this cancer with everything you've got. i came through everything with flying colors, and am living a life just as grand as my pre-cancer life. it's even better because i learned just how strong of a person i could be.

no matter what you choose, remember to keep thinking positive thoughts. it will help you to get down this rough road.