Looking For Info

Hi. I'm new here and newly diagnosed. I hope I don't make this to long but I need to give all the info so I can see if anyone has had this situation and may be able to give me a little advice. I was shaving one day and noticed the left side of my neck was a little swollen. Just under and forward of my ear. I went to the dr. about it and he said he thought it was a lymphnode swollen. He ran me through a script of penicillin, did blood work (which was normal), and sent me to an ENT, After a couple of visits and the node continuing to he did a biopsy with a needle. It came back neg. The node was still swelling so he scheduled surgery to remove the node. It was removed on 12-26-06. My neck swelled quite a bit after the surgery. He had told my wife that the node was golfball sized and really imbedded in my neck and he had some problems with a bleeding vein/ artery? I was kind of worried that it was bleeding becaause my neck was really swelling so I went to see him on 12-29. He said he thought that maybe it had bled a little  and might be getting a little infected so he gave me an antibiotic then told me the path results came back on 12-28 and it showed mestatic squamous cell carcinoma. This suprised me because the first bio was neg. and he had told my wife that the node was full of infection and he felt that was the problem. He then told me we would schedule surgery for an adenotonsilletomy and panendoscopy. I said ok. I went back to the emergency room on 12-30 becouse my neck was really swelling and he came in and agreed that I might have a bleeder. He then said that if he had to repair the bleeder that he would already be making a large incision and we might as well do a radical neck dissection. After he described this to me I spoke to my wife and told him to just fix the bleeding and let us pray about this first. I went through the surgery, no bleeding just really swollen tissue. He took out another swollen node and I'm to see him on Jan 3. I am really confused because some people say we shouldn't be cutting out so much without doing some other tests first to try to find the primary site. I'm also concerned that he hasn't involved or had me involve more dr.s i.e. an oncologist, my MS neuro ect. Me and my family are trying to find some answers or expirience to how this should be going or what we need to do. I know nothing about this process but I read a little about stages and considering it being in my nodes I assume that puts it around stage 3. I'm 33 with a wonderful wife and beautiful 18 month old son and I just want to fight this agressively so I can get back to my responsibilities. I'm sorry this is so long but I'm realy confused  and hope someone can help me out. Tahnk you and my prayers are with you. Lee

Hi Lee,

First let me say my prayers are with you and your family. My husband was diagnosed with SC 11/09/06. He had a lump on his neck, that was positive with a needle biopsy and had a neck disection on his right side, they found the primary on his tonsil. He is now going through radiation. We were blessed with a good referral to a wonderful ENT. I think the best advice I can give you is to find a Dr. you feel confident in and trust. Don't stay with any one you have doubts in. And you need to do it right away. Again we will keep you in our prayers.

Debbie

Hi Lee,

Sorry to hear about your diagnosis, but don't fret too much. You can do this. I am 54 years old and was diagnosed last year with Stage IV SCC w/primary in the right tonsil and 4 node involvement. Debbie is correct when she says to go to a doctor that you are comfortable with, but not necessarily one that tells you what you want to hear. You'll want a doctor that is complete in his approach to your diagnosis and treatment options. If you feel they are missing something speak up and don't take no for an answer. Make sure they explain everything to you so that you understand it. Above all else, educate yourself about the disease and treatment. This site is a good place to find info.

Head and neck cancer, at least this type, usually follows a fairly predictable path. It starts higher up and travels downward through the lymphatic system till it metastisizes to distant locations (lungs, etc...). I say usually because there are always exceptions. But let's assume that yours is following the normal path. It has already spead out of the primary location and is on its way. Your doctor wanting to do a radical might not be a bad idea because of that. His logic may have been to get the cancer at its forward most point and backtrack to the primary. That's not a bad thing. Sometimes the primary is very hard to locate so they will want to cut the path it is travelling. When they went in there and found the affected nodes they had to remove them but without a PET or CT scan they have no idea how far down the path it has traveledl. I would scream for a PET/CT. That way they can see if its gone any further down and deal with it appropriately. A scan would help them find the primary (sounds to me like nasopharyngeal) so they can remove that also.

If your going to have the standard treatment it will include a couple of rounds of chemo, usually a cocktail of 2 drugs like Cisplatin and 5-FU, and around 35 radiation sessions. Make sure you can go to a place that has IMRT or Tomo (3D) radiation options. That'll cut down on your side effects and hopefully spare your salivary glands (you have no idea how important they are). Right now, get your teeth checked (if your doctor hasn't already ordered it). Unfortunately you may have to lose some or all if they are in bad shape. If they suggest a feeding tube, don't worry. It'll help you maintain your weight. Many people can get through without one though (I had one and I'm glad I did). The side effects from the chemo will usually be nausea (try sniffing orange peels and eating ginger candy, it really works) and possibly some hair loss (it will come back). You may or may not get some pretty awful mouth sores. There's some stuff called Magic Mouthwash they can give you that will help but these too will pass. The radiation for me was the toughest but its full effects weren't felt until after treatment was finished. There is a great increase of mucous production (keep an ample supply of paper cups and tissues on hand), burns inside the throat, some irritation of the neck. Don't be afraid of the mask (you'll find out about that). Also, don't be afraid to ask for meds, pain or otherwise. You won't get addicted. And most of all, pay attention to everything they are doing to you and ask questions!

I finished my treatments last January 27th and am doing great. I'm jogging 3 miles a day and lifting weights 4 times a week (not bad for a 54 year old Stage IV cancer dude). I can eat almost as I did prior to treatment but not as hot & spicy. I'm working on it though and it's getting better all of the time. The best part is that I now truly appreciate all of the wonderful things in my life and I know that I've been tested and passed. The same will happen to you. Just remember, you CAN do this. Also, remember that your loved ones will be going through the fear and everything as well. It's not going to be easy for them so be kind. They need your strength and believe me you need there's.

Help is alway available at this site so if you need anything just holler. We're with you.

Joe 

 

Thank you Joe and Debbie. My spiritual and physical strength is as high as ever. With help like yours and the prayers from all of my relatives I really have the courage I need . And thank you for some insight, and advice. For me it seems the actual fight is not as scary as making the right decision of who to treat it. I think we are on the right road now. Things are getting ready to be pretty busy but I will try to keep an update of how it's going. Thank you so much for your response. Good health and good help to you and your families. Lee

Hi Lee, I was diagnosed in 8/05 with stage 3 scc W/primary in my left tonsil.i think it was smart on your part to have only done the node removal until you know where the primary is. i can tell one thing that i learned from my experience is you are in charge of your health and you alone. you will be told many different treatment options but it will be up to you to make the best decision for you and your family. i would demand that a PET scan done immediately to find where the primary is. i would then go to the best head and neck oncologist you can find in your area and veiw his treatment options. i would then get a second opinion on your best treatment plan from another h&n oncologist.my first treatment option upon learning of my cancer was radiation,chemo and a radical neck dissection. i got a second opinion from M.D.Anderson  and their recomendation was 33 treatments of rad and removal of my tonsil.i am doing great other than a few dry mouth issues.if you do have radiation i would look into the tomotherapy which will help with your saliva issues.i know this is a real scary time for you and your family but this can be treated.Feel free to contact me anytime.

Hello Joe, it's Lee from the looking for info post. I had my tonsils removed and they done the biopsies ect. They found the tumor in my left tonsil so that was good news. I start chemo and rad. on Feb 6 then they will make a decision on the radical neck dissection. My pet scan showed the tumor on the tonsil and also shows some of the remaining nodes on my left side are cancerous. I pretty sure they will go on with the neck dissection. I was just updating you, but I also had a couple of questions. I just read a post regarding huge amounts of research on treatments and prognosis. I never have asked what my prognosis is because I really don't find it to be relevant. 2 years or 60 years I still have the one option, treat my cancer, live the best I can, and fulfill my responsibilities as best I can. As far as overloading myself with info, I found a set of dr.s I could trust at a university cancer center and said lets do this. My question is does this seem crazy to you. I guess after reading posts, I began to question whether I researched enough because everyone seems to be doing it. What do you think? Don't get me wrong I am confident with my choice but my stress level has been very low as compared to many of the posts I read. I have MS also, I guess my experience with it just taught me to let the proffesionals do their job and for me to do mine. I really haven't participated much in this forum because I really just got started. I do know one thing, a tonsilectomy at 33 really hurts. I think they took my tongue outside while I was under and stomped up and down on it in the gravel.:-) Anyway, I thought maybe you could give me some insight or advice. Thank you Lee

Hi,

 

<>I have a history of my treatment of my cancer on the web. Maybe that will help you understand the process. Many docs are different, look for one with  experience and success

http://www.lishosting.com/allen

you have gottena lot of great advice from the people here. hope this helps you too. 

Good luck

 

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Hi, my husband was diagnosed with the same cancer in october and he is just 45.  I turned, like you, to this web site.  It is a great thing to be able to talk to people who have gone through the same thing.  I think that you should get a second opinion.  My husbands doctor thought that it was nothing but he did send him(thank god) to a head and neck surgeon for a second opinion.  He has since had a modified radical neck dissection and has endured 6 weeks of radiation and 2 rounds of high dose chemo.  He had 34 lymp nodes removed and 4 were believed to have had cancer in them.  One thing that happened is that when he had the original needle byopsy done, his neck swelled up very large.  The doctor said that sometimes this happens.  It is very contraversial whether we should have done the byopsy or not.We learned this later.  Some believe that when you do the byopsy this way, you release some of the cancer cells into the rest of the neck. 

My husband primary cancer has not been found yet.  We are hopeing that it was all contained in the one area.  The doctor told us that it is rare but it does happen.  When he had surgery they did byopsys all the way from his sinus to his lungs.  All clear.

I think the best thing i can say to you is that you have to ask alot of questions from your doctor and if you have a nurse come to your home to help you, ask her alot of questions too.  We found out alot just that way.  If you feel that you are not hearing what you need to know.  Call the cancer information hotline or ask your doctor if you could be referred to a oncologist.  One thing we learned is that you have to educate yourself.