Hello everyone, this is my first post in here (Thanks to Brian for the help) I'm a 38 yr old male, Never smoked in my life and a father of three 5yr boy, 11yr girl, and 13yr boy.
I have stage 4b tonsil cancer with multiple nodes involved in my neck. Diagnosed on Nov 5, 02 primary was a 2cm tumor that was found behind my left tonsil. I have since had a wide field tonsillectomy that removed all of the tumor hopefully. Now I'm waiting for my first radiation treatment, along with chemo scheduled for 40 radiation treatments and weekly chemo.
I have read in a lot of the posts in here that some of you had some form of neck surgery. I have one node at level 2 in my neck that is 7cmx4cm in size on the left side (very uncomfortable) also 3 smaller ones that are involved on the same side and 3 small nodes on the right side. Lungs are clear, thank God. But I'm not having any surgery, I'm in Toronto Canada and being treated at The Princess Margaret Hospital.
My main question is this..
Is this a normal course of treatment? What should I expect for pain medication? I'm also scheduled for a feeding tube, the doctor said it would be in for about 3-4 months that sounds scary to me!
I came across this message board while surfing for info on the net and have read most of the posts and you all sound like a very brave bunch of people and would like to stay current with all of you. My doctor said he is going to treat this very aggressively for cure and not control... I guess that means there is hope.
God Bless, Ray

Welcome Ray,
Ray, my tumor was base of tongue with neck nodes so someone else can probably give you more specifics concerning tonsils. My treatment consisted of 4 weeks of light chemo, and about 40 radiation treatments...which you will receive. I was given pain pills, but after 3 weeks of radiation I could no longer swallow food or pills and I was prescribed Duralgesic pain patches. They come in various strenghths...I went from 25s to 75s and back to 25s as I was weaning myself.
I got my PEG after 3 weeks of radiation. I have now been through with treatments for 3 months and am still dependent on the tube. I can swallow liquids including broth and today drank a whole can of boost for the first time. Some people heal more quickly from the PEG, but the docs always commented on how burned up I was from the radiation. Radiation is painless while you are recieving it, but it does take its toll. The worst time is the first week or two after the treatment ends.
So, don't feel bad about the PEG..it is great as it will allow you to keep your weight at a decent level. Just know that it is a long process and have patience...you have no choice anyway. Lastly, stay in touch with us. I found this board at my low point after radiation treatment and I found more comfort here than I did from a psychologist or from the support groups that I found. One last bit of advice...meet the social worker at your hospital, and get a list of resources...support groups, free counselling, etc, and take advantage of it if you need it . I know that you have a wonderful , free medical system in Canada so take advantage of it...I wish you all the best. Please keep us updated.

Danny G.

Welcome, Ray!

I had a different tumor and different treatment in that surgery preceded radiation and chemo. However, I would like to make just a couple of points. First, do NOT worry about the PEG. I was almost nuts thinking about it, and it was a case of completely wasted worry. It is an outpatient procedure. You will be asleep and when you wake up, you have a tube. Maybe a little, very little, soreness the first day. After that, fine. If you have questions about PEG care and feeding, search this forum, or ask us. Those of us who have had a PEG know that it made a tough situation much easier than it would have been othewise, one because if you lose too much weight too fast, you will set yourself up for more medical problems, and two, you will be able to take in adequate nutrition and water to heal, even when your throat is too sore to swallow anything. Ray, there really is no downside to this, so don't spend any energy worrying about it. Second, as you experience changing sensations or feelings during chemo and radiation, please come here before worrying. For example, it is normal to lose all sense of taste after a couple of weeks, and by the end of radiation, you may well lose your voice for a couple of weeks. Had I not known to expect that last little item, I would have been pretty upset. Fatigue will also creep up on you, and fighting it is useless. You are about to participate in a war, but one that is winable (is that a word?). We will be here for you every step of the way. I really like your doctor's attitude. That is important.
Joanna

Thank you for the quick and caring responses, I

Hi Raymond,
My case is rather similar to yours with stage IVB tonsil cancer (on the left).Never smoked or drank in my life. I didn't have any surgery done to remove the tumour or lymphnodes.I received 48 radiations and 4 chemo (Cisplatin)a year ago. No pain when you have the treatment so don't worry. But side effects are really disgusting. Dry mouth, sore throat, nausea and fatigue. The most difficult time is two or three months after completing treatment. Sharing with other patients helps a great deal because your caregivers may not be able to understand how you feel. I was back to normal work 6 months after treatment and could eat normal food soon after. I am very ready to help should you have any doubts on anything.

Ray,

I had a tumor of the left tonsil, 30 lymph nodes, and a very small section of my tongue removed during surgery on 9/13/2002. 2 of the nodes came back + and all margins were clear. It went well but I guess it still all adds up to stage IV. The surgery is or, depending on when you read this, was being followed-up by 7 weeks of radiattion treatment to clean the area up. At this writing I have 3 more treatments, only 2 left at the end of this day!!!!!!Upon initial diagnosis it was believed that the cancer was confined to the tonsil and I could choose the radiation or radical tonsillectomy route. I was not given the option on the lymph node issue. Some MD's thought I had an enlarged node and some did not, but I was getting some form of neck dissection no matter what treatment I chose for the primary tumor. Once it was "felt" in the tongue my options were reduced to the above described treatment. I tend to "lurk around" in forums and there are many people here more knowledgeable than I, but I thought the node removal was the standard. Yours seems kind of large so maybe they expect to shrink it with the chemo/radiation treatments so they will be easier to remove, or just plain wipe out the cancer cells. In any event, as everyone here has stated the radiation is the hard part. Best of luck and one thing I know for sure is that those 3 children, and a bottle of water at all times, will provide all the motivation you need to fight the battle! People tell me to keep a positive out look, I tell them I have a 13 year old daughter and a wonderful wife to be! End of story.

Glenn

PS: Karenng, you wrote, "The most difficult time is two or three months after completing treatment". I expect a long recovery but I had heard weeks, not months for the most difficult time. Was that the case for you?

Raymond,
It is very speculative of the Dr. to tell you how long you will have the feeding tube. One friend of mine with similar base of tongue cancer to mine, got rid of his tube 3 months after radiation ended. I have already passed the 3 month time and still can only eat broth.Brian says he had his for 8 months.
Today I met with my radiation oncologist, and after looking at my throat with the scope told me that I still have a lot of healing to do before I can really eat. He said that 80% of the people are about healed by now...but the spot where my tumor used to be is raw and he predicted at least a couple more months for me. Oh well, what could I do...I picked up a dozen more feeding bags at the hospital and I'll order another month's supply of formula.
Maybe by Valentine's Day or St. Patrick's day I will be able to bite into a luscious chocolate chip cookie or a succulent brownie.Now about all I can do is smellem'. I can't wait!

Danny G.

Welcome to the board. I would have posted a response to you sooner, but we have been at MD Anderson Cancer Center in Houston, TX having my husbands' TWO and half year check up. Everything still looks great, what a relief! Anyway, My husband's cancer was very similar to yours, and he was 37 when diagnosed. At the time we had a 8 year old son, 10 year old daughter and a 13 year old son. (Similarly to you) My husband found his by surgery to see what the lymph node was, then they searched and found the tonsil cancer, took it out. That was all the surgery he had. We then went to MD Anderson where they told us had we had just a needle biopsey of the node and found it to be SSC, they would not have even done any surgery, but gone straight to radiation. At MD Anderson he underwent 33 radiation treatments. It was hard getting through, but we made it, and now two and half years later, life is wonderful. He does still have some dry mouth, but not real bad as he took amifostine (a drug which protects the saliva glands) during each radiation treatment. If you have any questions along the way, just post it and the wonderful, knowledgable people on this forum will respond. Hang in there, you can make it through and come out on the other side as we did.
Julie

Raymond,

You and I are about the same age and our children's ages are also similar, mine are 10, 13, and 15. I had surgery to remove my cancer in October 2000, all has been clear since that date. I have gone through several procedures to rebuild my upper jaw and place dental implants. From my perspective, there is light at the end of the tunnel. As you can see from the previous posts, there are many resources here for you to draw from. Keep your spirits up and keep on fighting.

Glenn, I am not very certain about your question over weeks or months being the most difficult time. Everyone's experience is unique and can be reference to others only. In my case, the side effects of treatment accumulated to the 'peak' three months after completion. It was not the physical pain I could not endure; it was rather the emotional disturbance that I could not see light at the end of the tunnel that troubled me. I was flung into severe depression. I got to take anti-depressants (am still taking)but I started to learn how to accept these side effects as a price I have to pay in exchange of my life. With professional help and medication, I was able to go back to my work 6 months after treatment and gained back the weight I lost during treatment.If I had found support from other patients earlier, things could have been much better.
Karen.

You answered an unclear questions quite well!!! I can see how depression may be a problem down the road for me but I was asking about the physical side effects of the radiation. I have been told that once I stop the treatments, my general radiation related discomfort will continue to worsen over the next few weeks and then I will start the lengthy turn-around. I'm in a "short-term" how am I going to feel mind set now because I only have 2 treatments left. Only 1 if you see this after 11:30 New York time! I have weathered the treatments really well and this is a big Christmas gift for the whole family, Finished up 2 days before the big holiday! Thanks for the reply and all the best to you.

Glenn

Glenn,
Although each experience is individual, a lot of us here, including myself, experienced my first and worst depression after my treatment ended. They kept me so busy going to the hospital once, then twice a day for radiation, in addition to seeing dentists, nurses, oncologists, etc. Then, all of a sudden...there I was...at home, sitting around, watching too much T.V., feeling I had nothing to look forward to ...my next tube feeding...whoopee. I had time to go to the movies or to the park to putt golf balls or to visit a friend or the office...but I did not feel like doing any of that stuff. For me, this was definitely the most difficult period. After initial diagnosis I was kind of cocky, thinking I can handle any of this stuff...but the depression after treatment ended really knocked me back.
However, I fought it, first by taking a nice long walk every day, getting friends to visit, staying more busy, finding some counselling resources, and best of all finding this website.
So, it is different for everyone, but typically that is a really hard period.

Best of luck..

Danny G.

Thanks Danny. Everyone is so happy I'm done and I'm trying to explain that there are 2 ways to look at the fact that you are no longer being treated for cancer. For me it's thank god it's over and the other is quite simply, they're not treating me for cancer!

Take care. thanks again,
Glenn