I just join this group and don't know much about head and neck cancer just an infant in this journey. I happened to wake up one morning that I had regular appiontment with my GP and noticed a what I thought was a swollen lymph node. He felt to and put me on antibontics and told me to come back in 12 days. Went back March 1 and wanted me to go to ENT told him didn't have time as daughter was getting married in at little over 2 weeks and have son I Navy due home from Iraq in a few months and wanted to go met him coming home. Well he came back in a few mins. later and said 10 o'clock tom. morning. Went to ENT the 2nd of March and he felt and looked at it and wanted a needle biopsey call pathologist to come to office then and did it. They called the next day and wanted me in the next week appt on 9th and said biopsey came back cancer. Hung up in shock and went crazy waiting the week. Went in to ENT and said matastic cancer needed to find primary. Did some kind of scope down the nose and said it looked clear thing about 2 ft. long. Sent me for CT scan that afternoon. Had app at his office friday said 5 lymph nodes and didn't show primary sent me back for pre admit for PET Monday. Went back to him Tuesday the 15 and said primary is on back of tonsil. Oncology had already called and set app for this Monday. ENT Dr is doing Monday the 28th start with full mouth extraction (guess vanity shouldn't matter much right now)tonsillectomy, parendoscopy? with left neck dissection. Metastatic non-small cell CA left neck. other than that have cardiac clearance with cardiac Dr. wed. Both GP and ENT DR.'s sent Red Cross messages and son will be home this week some time guess this tells me how bad it must be. CT and PET showed nothing else anywhere other than that one tonsil and then the lymph nodes. Had NO other symthoms. Thanks for listning and any advice appreciated by the way ENT said radiation and chemo.

Donna,

God Bless and best of luck to you!!! I too am an infant, so I don't know how much advice i can give, but I certainly can relate emotionally to what you are going through. I too was NUTS, but as time went on, I felt better and the prognosis was good. I truly hope your procedures go well and wish you the VERY best!

Donna,

Welcome to the "Club Nobody Wants to Join". I am truly sorry for your recent diagnosis. If you can find the time, go to the main portion of this website and learn all you can so you can make the best possible decisions regarding the options that will be presented. Encourage your daughter and your son to do the same. Many questions you have can be answered.

Many of the flights of military personnel returning from Iraq come through Dallas. I would be honored to meet your son if he comes through here and especially speak with him regarding this disease, if you like.

I know it is difficult to hear the C word and then the world just spins, seemingly uncontrollably, for a while until treatment is over. Many have traveled the road ahead of you and all of us welcome you here and will help you find the answer to any and all questions you may have.

It is a good practice to write down your questions before you go to the doctor, take some along to help take notes and make sure all your questions are addressed before you leave. The doctors will assume you already know if you don't ask.

It is also good to seek a second opinion at a major comprehensive cancer center. You can find all the members of the National Comprehensive Cancer Center Network at www.nccn.org if you wish to see the major centers. Probably the closest for you would be MD Anderson in Houston. Take the time to research and make the best decision as if it is your only chance at beating this.

I wish you the best and please let us know if you need anything.

Ed

Donna, welcome to the site. Sorry you had to find us. Your story is very similar to mine. I found my cancer because the lymph node on my right side was swollen. My GP checked me out for my annual physical and I asked him about it. He sent me to an ENT immediately. The ENT couldn't find the primary site but told me he thought it was SCC. He took a small needle biopsy and called me in a week indicating it was suspicious but not confirmed. CT scans, PET scans, MRI's, additional needle biopsies later and they finally used a sonogram to direct the needle and got enough tissue to prove SCC in the lymph node. Still no idea of primary site. Did a tonsilectomy and the doctor couldn't see a tumor. The pathologist found it, a 2.1 cm tumor of the right tonsil. My ENT insisted that I go to a major comprehensive cancer center. As noted above, please go to a cancer center before surgery as some treatments can shrink the tumor and the surgery is much easier and much less tissue is removed due to the positive effects of shrinking the tumors. Radiation and chemo, as recommended by the ENT, can occur before surgery and make the surgery a lot easier on you. Please get a second opinion at a cancer center. Will add you to my prayers. Please thank your son for his service.

Hi Donna,
When you say "full mouth extraction" do you mean all of your teeth?? If this is what you mean, what is the explanation for needing to pull all of your teeth? Some doctors will pull a patients teeth when there really isn't any need to. Please let us know.
I hope we can help you through this with our experience.
Minnie

Yes they are going to have an oral surgon pull all of them as in my profile I was an over the road truck driver for 28 years. Ran double with my husband some of the time and about 10 years ago I was getting out of bunk and someone decided to stop right in front of us on the interstate which threw me forward with husband trying to shut it down and not hit them and had hit mouth on steering wheel have managed to keep most of them but they are damaged and with the radiation they are going to go ahead and pull them as they would just be more trouble.

Hi Donna,

My husband received the same shock that you did receiving the news that it was cancer. He is now a year post treatment and all is going well. At the time we wondered how we would get through it but we did and we have gone on to celebrate our daughters's high school graduation and the thrill of taking her to university. We were always truthful and open to the kids about their Dad's cancer and the support and love they gave him was very comforting to him during his treatment. Good Luck!

Debbie M, husband had tonsil cancer

Thanks for the encourageing words. I meet the oncologist today. Waiting to here from son that he is back in the states. That will be a relief to have him her with me also. Had wedding Sat for daughter so happy that she has a very good man in her life. Ed thank you so much for the offer to met Mike but I have no idea how they are getting him home and because of security I won't know till he is in the states as all the rest of his unit and friends are still over there. Makes me fell so much better when I see the posts for down the line. I know it will be a fight but boy am I eating everything I think I want right now while all of it's still good. Diet later right! Yes I will thank my son for his service he is as of Aug. 15 years service and I tell him all the time how proud I am of him and what a brave man he has become and has a WONDERFUL wife and children to support him and I know it is so hard on them to. This was his second tour this time around and was there for the 1st gulf war also. Well vented enough for right now and have to prepare myself to me oncoligist and go to Cancer center.

I don't know if suppose to post this or not but this is about my cancer center---- Affiliations with the National Cancer Institute and Mayo Medical Laboratories not only offer patients progressive approaches in the fight against cancer, but also opportunities to participate in research programs and clinical trials believing that our participation can help detect better ways to prevent, diagnose, control, treat and most importantly, cure cancer.------ Does this mean maybe they have access to some of the new cutting edge technology and know of some of the latest clinical trials going on etc or know of refferal options etc I know I'm rambling today but I'm so scared. Thanks

That statement reflects the services and treatments that would be available at any comprehensive cancer center. If you are at such a facility, they are at the top of the food chain in treatment and in the availability of clinical trials. NCCI facilities have to meet certain standards to be considered a member. Smaller hospitals have less involvement in clinical trials. This is not necessarily because of quality issues, but because they do not have the traffic flow of patients found in the large institutions. Any institution can refer you to another that has a treatment modality that they themselves do not offer. This however all too frequently brings up the financial issues of keeping a paying patient in the system vs. sending them out to someone else. We all like to think that decisions are made on the basis of what is best for the patient. In the real world, I am not always so sure.