CancerCompass message board discussion started by michael s. on 8/14/2002 http://www.cancercompass.com/message-board/message/all,572,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, I just found out that my dad has tonsil cancer and some has spread into the neck lymph nodes. The doctor started chemo yesterday they said it is a new program using pacilitaxal and carboplatin for two heavy sessions then 7 weeks of radiation with the pacilitaxal. He is a level 4 stage two. I would like to find out some more info on this subject and any help would be wonderful . --Mike S., Blaine, MN Thank you and god bless!!!! michael s. Wed, 14 Aug 2002 00:00:00 GMT Michael, So sorry about your father. I am recovering from tonsil cancer, to be more specific, squameous cell carcinoma with extra nodal involvement. On March 1, I had a neck dissection and a month later began radiation which lasted 6 weeks. During that time, I had 4 sessions of chemo, using carboplatin. My treatments stopped on May 15. Everything happened at Mass General and Mass Eye and Ear in Boston. My case was determined to be a stage 4, because of the size of the lymph node involvement. However, my doctor and I are optimistic that I will survive for at least 10 years! I am 60 years old and generally healthy. My attitude is that I can "kick butt" when it comes to surviving this ordeal. I am not sure what info you are looking for, however, I can tell you that the only thing that has slowed me down more than I expected came AFTER the treatment was over. The two weeks following were very unpleasant, with nausea, vomiting, very sore throat, generally feeling rotten. I am still using my Gtube for nutrition, and while I can swallow, I can't really eat anything yet without burning and swelling the following day. I am told that healing time varies but by THanksgiving I should be eating turkey! I hope that is true. I find that the most frustrating and disspiriting thing to me is this period of healing. While the wonderful people at MGH prepared me for everything there, no one ever told me about the long days and weeks and months at home following , when I would want to be "normal" again...with regard to eating, talking, exercising and working. Little by little, my energy is coming back....my throat has days without hurting, but fighting depression during this part has been a huge task. I hope your father has a great support system, because that is a key factor.... Good luck to him and to you and your family. JL Jane L. Mon, 19 Aug 2002 00:00:00 GMT Jane, so happy to haer that you are doing well. Thank you for your input it helps so much to hear about others that have made it through this type of cancer. Here's to that turkey tasting great. Michael michael s. Mon, 19 Aug 2002 00:00:00 GMT Please let me know if you find out anything my relative has the same she had tonsil cancer and then she had surgery and then they found lymphoma in the neck. Cyndi T. Sat, 24 Aug 2002 00:00:00 GMT If I can provide any information from experience I will be glad to - In June of this year after seeing many Dr. with a sore throat and a CT scan that was read incorrectly I got with an ENT to find I has a squamous cell carcinoma of my left tonsil with extended into the lymph nodes in my neck. I had my tonsil removed. Mine was classified as a T2, N1. July 1st I started radiation and I am now 5 weeks after the end of my treatments. I received a daily injection called Ethyol which is supposed to protect the salivary glands, time will tell there. The hardest part of all have been these weeks since the treatment ended. My oncology center and staff have been wonderful and helped in every way they could. I didn't have a stomach tube but I did go twice to the emergency room for fluids. I have lost 30 #'s. The hardest part is trying to eat and swallow, my goal a day is to finnish a 20 oz bottle of water and I should be drinking much more, from the start the one thing I have been able to eat is Jello Tapioca pudding, the refrigerated kind. I have put my pain medications in it. I find the health drinks hard to drink, and want real food so bad. I can mix Campbell's potato soup with water and add baby meats. There is a supplement called MetRX that I can drink also, it's a high protien powder. I have kept a log through this treatment. The next step I have to face is a neck dissection if anyone has any information on that - May God be with you, my faith has brought me this far, praise the Lord. Beverly M. Sat, 21 Sep 2002 00:00:00 GMT I see your message is dated in 2002. I am wondering how you are doing. I will tell you my husband's story if you write me back. It is lengthy and we are in the early stages of treatment. Please answer soon, if possible. Thanks D.K. Marlya53 Fri, 15 Oct 2004 00:00:00 GMT My 9 year old nephew has had strep throat 5 times now in 4 months. The pediatrition sent him to an ENT to have his tonsils removed. However when the ENT took a look at his throat she said she was concerned. She said although tonsil cancer was rare my nephew had a lump on his tonsil the size of a nickel and she felt he needed to have it removed now. She scheduled him for surgery in the middle of April. My sister feels this is too long to wait (it is now the middle of March)and is already going crazyafter only a couple of days. Should she keep this appointment at our area Childrens Hospital with an excellent ENT or should she get a second opinion at a cancer institute which we are very blessed to also have very close to home? Sistersscn Sat, 19 Mar 2005 00:00:00 GMT Hi Jean, I would say go head and stay with your appt. I found out I had cancer in Jan of 2002, surgery was for March, doing tests and so on, I was concerned about the time frame also but was told in that time frame the cancer wouldn't really spread to a point that would make a differents, My prayers are also with your family. RonB Ronald B. Sun, 20 Mar 2005 00:00:00 GMT My sister has spoken to the ENT since my nephews last appointment and has been able to move his surgery date to the end of this month. Although we are all so nervous about the results we are thankful for the date change. I understand that the Lord only gives you what you can handle but I sure think He is overestimating me on this one!!! Sistersscn Wed, 23 Mar 2005 00:00:00 GMT I have just had neck disection and have been diagnoised with squmious cell carcinoma of the left tonsil. Are there and Vietnam era or Korea '64-'75 Vets out there with the same. Luck to ALL Paul 4thebrdz Fri, 17 Jun 2005 00:00:00 GMT Paul, I hope you are on thr road to recovery. My husband has just been diagnosed with tonsil cancer even thought he had them removed when he was a kid. The doctor said they must not have gotten it all and it grew inward! We go to Mayo for discussion on neck dissection next week. What should we prepare for? Sheiladr Sat, 25 Jun 2005 00:00:00 GMT My father just had a modified neck disection and the primary was found in the tonsil which traveled to one lymph node. He was a Veitnam Vet too. I believe it is correlated to Agent Orange just as his Diabetes II was. We are looking into getting diability for the cancer. Anyone else have a similar siutation or having luck with disability?? Carene14 Fri, 08 Jul 2005 00:00:00 GMT I have an old buddy just diagnosis and begun treatment (surgery, chemo, radiation) with Stage 4a tonsil cancer with 4 lympn nodes involved. Any idea where I can find prognosis, outcome, and mortality info for this type of cancer? Thanks The Gofer Gofer Tue, 25 Oct 2005 00:00:00 GMT Hey I just read your post and my dad is going through treatments for forth stage tonsil cancer so after they give you 10 yrs??? i dont get it??? Kmcclena Wed, 09 Nov 2005 00:00:00 GMT I had tonsil cancer diagnosed Feb. 2001. Radical neck surgery March 2001. I had 64 lymph nodes removed of which 4 contained cancer. 30 treatments of radiation 6 weeks @ 5/week and 6 treatments of chemo 1/week for 6 weeks at the same time. I am marking my 5 year anniversary of cancer free. This beast can be beat. Tonsilcancersurvivor Tue, 17 Jan 2006 00:00:00 GMT I read your email where you had tonsil cancer and had chemo and radiation. I too will have radiation. I don't know yet about chemo but I am interested in what type of chemo you had. I see the oncologist on Tuesday, Feb. 28th. Rnomad Sat, 25 Feb 2006 00:00:00 GMT I had carboplatin chemo-therapy. I had one treatment a week for six weeks in conjunction with my daily radiation treatments. My local Oncologist had spoken with Sloan Kettering in New York City to develop the best treatment. Any other questions do not be afraid to ask me or especially all of your doctors. Good Luck and God Bless. Tonsilcancersurvivor Mon, 27 Feb 2006 00:00:00 GMT I finished my radiation treatments two months ago. I did not do the chemo. I did have a feeding tube. I would be glad to share my experience. Jim48 Sun, 19 Mar 2006 00:00:00 GMT I just finished 6 weeks of radiation for tonsil cancer. No chemo. After 5 years, what after affects do you have- dry mouth, hair loss, taste buds etc? Jim48 Sun, 19 Mar 2006 00:00:00 GMT I just finished 6 weeks of radiation. I did not elect chemo though it was recommended by chemo doctors. I felt the radiation doctors were comfortable with my decision. How ya doing? Jim48 Sun, 19 Mar 2006 00:00:00 GMT I just celebrated my 5th year Cancer Free Anniversary. I had very little hair loss during the Radiation and Chemo Treatments and it stopped completely probably after 3 or 4 months after the treatments stopped. I have permanent dry mouth. The Saliva Glands are working, but do not produce enough saliva especially during exercise. I used to referee High School Basketball and I had to give that up. I drink a lot of water and chew sugarless gum which really helps. My taste buds are not the same. Some foods that I used to love I cannot eat ie fresh fruit, either the citric acid burns my tongue and throat or the sugars dry my mouth and throat even more than it is. I always treated myself to a nice cold milkshake after my treatments and now ice cream tastes like paste. I used to eat spicy foods and now it burns too much. Other than those minor inconveniences I am doing great. I have a very supportive wife and family. I keep all of my doctors up to date on my health. I see my surgeon in January, radiation oncologist in September, Chemo doctor in June and my primary care doctor April & October. Any tests (blood work) or x-rays (yearly chest), results are sent to all 4 doctors to keep them all in the loop. Remember to take life 1 day at a time. If you are financially able rest and build up your strength and stamina for 1-2 months after your treatments. Do only what your body allows you to do. Do not be afraid to talk about your disease and do not try to deal with it by yourself. You have the disease but it does affect your loved ones. They will not always know or understand what or how you are feeling but try to discuss it with them. One last thing. Do not give in to the beast, keep your spirits up, do not feel sorry for yourself, do things that make you feel good. T.J. Tonsilcancersurvivor Mon, 20 Mar 2006 00:00:00 GMT i just finished up w/treatments. i had tonsil cancer that spread to my lymphnode. basically i was told that if it is caught above the sternum chances are good. if it has spread below the sternum, not so good. i was told the prognosis for this type of cancer was a 60% chance of survival for 5 years. however, that is very general. so many things can make a difference. for example-- i am 36 (young as the doctors say) healthy, and never smoked. so, they don't know if my chances are better or worse because i am young, healthy, not a smoker, and they don't know what caused the cancer. i was stage 4. Vtyoda Sun, 11 Jun 2006 00:00:00 GMT hi. i recently found out i have this type cancer. i've had my rt. tonsil removed, and i see my cancer doctor for the first time next tuesday. i'm a radio personality/I.T. professional. my girlfriend told me about this site yesterday, and from what i'm reading so far...i feel as if i'm going to lose my budding radio career. (21 weeks old) i lost 22 lbs after my tonsil surgery, and have gained 11...and i'm trying to bulk up before i start. any words of wisdom? advice on what i should do now to prepare myself, my family and radio listeners for this journey? Mr_aj Wed, 21 Jun 2006 00:00:00 GMT i read your message. once you meet w/your doctor you will have a better idea of what to expect. i had cancer in my right tonsil and it spread to my lymphnode/s in my neck. i did 3 sessions of cisplatin. once a month for 3months. while doing that i took xeloda (chemo pills) for 2 weeks after the chemo infusion. this was hard core and made me very ill at times. after the third chemo session i got about a 3-4 week break and then began 7 weeks of radiation (5 days a week, weekends off)while taking a weekly infusion of carboplatin (chemo). i wasn't as sick. you just get really tired. i was extremely fortunate that i did not have a feeding tube. by the 5th week you don't eat much. (to give you and idea i put on 25lbs before starting treatments. by the end i lost 43lbs.) your throat really hurts. little things like yawning, swallowing, eating become very difficult. spicy foods, tomatoes, any thing citrus, will not be pleasant. lipton chicken noodle soup was the best for me, a real life saver. can't tell you how much of that stuff i ate. after the treatments i had about a 4 week break to heal again before my neck surgery. they call it a neck dissection. i was uncomfortable for a few days, but have healed great. some people have a hard time speaking. your tongue and mouth get very sore during the radiation. but again, i was always able to speak. i get dry mouth, but drinking alot of water helps. everyone reacts differently. i feel like i came through everything very well. i took some time off of work because it is hard. but, i am back full time, and full speed. your family will be a big help and your listeners can be great support for you. you will go through some changes, but the side effects are not insurmountable. let me know how your doctors appointment goes next week. let me know if there is anything i can do to help you through this. contact me anytime. Jon Vtyoda Wed, 21 Jun 2006 00:00:00 GMT Hi! Thanks for such a quick reply. Question, how long ago were your treatments, and at what phase are you know? How long total (start to finish) was your process? I'm trying to gain weight (to no avail) At what point is a feeding tube necessary? Wow...didn't realize I had so many questions. I wonder if I'll feel like talking on my show. I'm ready to get it underway and get this behind me. Also, I've gotta keep the show going while I go through this process. It's once a week on Saturdays. How much work did you miss throughout the process? After reading all the posts all over the web...I'm starting to get antsy. (sorry for so many questions.) Mr_aj Thu, 22 Jun 2006 00:00:00 GMT Well, I had a lymph node on the right side of my neck taken out and biopsied Sept. 16 this past year. ( that was on a Friday) On Monday, my ENT called and informed me to come see him at his office. I knew something was drastically wrong then. I asked and he said it was cancer, but he'd rather talk in person. He told me he didn't know where the primary source was, so he scheduled to go back in a couple weeks later to take out four more skin samples. The tonsil came up positive for squamous cell carcinoma. I then was referred to UVa and had an appt. a couple weeks after that with the head oncologist there. He specializes in head & neck cancers. HE checked me out and looked at my scans that were sent up. I then went and talked to the UVa radiation and chemo guys.....oh dentist too to make a mold for radiation. This happened over a month or so....seemed to be no rush while my wife and I were freaking out. Ann, my wife was 8 months pregnant at the time. I had chemo first....Cisplatin around Halloween. Went for an infusion every three weeks. It was rough. Had an infusion right before Thanksgiving too, the day before my son was born. I'm 36 now by the way, never smoked. I then began radiation beginning of Jan. and went 7 weeks daily. Once a week I had chemo again. They finally switched me to Carboplatin ( a cousin of Cisplatin) which didnt make me as sick. I finished treatments mid Feb. The week following treatments was the worst for me. I got real sick, shakes, vomiting, etc. Then, I got better rather quickly. My neck dissection was early March and went well. I took short term disability from work beginning Dec. 30. I was able to work for a while. I went back half days for two weeks right after surgery, then have been full-time since. I feel good and am teaching karate once a week. Oh, I too bulked up prior to treatments. I got up to 225 and am now a healthy 180. I'm trying to keep it that way. About the feeding tube. I hear most people decide beforehand whether to get it or not. They tried to get me to do it, but I refused. I think it's a mental thing. :) They used a tomotherapy machine for the radiation, so it minimalized damage outside the affected zone. I do have some dry mouth still and refrain from eating most spicy foods, but cave in occassionally. Feel free to ask as many q's as you like. I'm new to this too! My wife lives on the net now researching all this stuff. Why in the hell would I get this so young and healthy? There are many of us out there though. Jon Vtyoda Thu, 22 Jun 2006 00:00:00 GMT My Dad has recently been diagnosed with cancer, primary right tonsil with 1 lymph node metastisis. He will be recieving 8 weeks of radiation with every other week of chemo (carboplatin) Surgery isn't an option at this time. He is a stage 3. We really need advice. Did you respond well without getting the chemo? He is so scared and really afraid death is imminent. The doctor states he needs to get a peg tube. Any advice on ANYTHING would be greatly appreciated. He is a disabled vet, and is type 2 diabetic. They are going to pull out all of his teeth next week before they start any radiation! Anyone else familiar with all of this? Please respond soon! Thanks, my prayers with you all. Deb Strickland in tx Fri, 07 Jul 2006 00:00:00 GMT My son was just diagnosed with tonsil cancer and will be undergoing a tonsilectomy and then radiation treatment. He lives in another city, and except for visits both ways, have only occasional phone contact. He's a pretty quiet and private guy. I want to keep the communication going, but I don't want to bug him with questions and my concerns. I've been reading a lot about it and it is scary. I want to be supportive in every way I can and still respect his way of handling things. He sounded so brave when he called and I want to be brave and positive for him. I'd like to know from someone with cancer what they feel and also from family members of cancer patients living distances apart. If I lived nearby I know I could help with day-to-day needs, but don't want to "move in" and be in the way. I have so many questions, are his doctors the best in their field, are they preparing him for what is ahead and are they up on the latest and best treatments. Grandmak Sat, 08 Jul 2006 00:00:00 GMT Debra G. - I had stage 4 tonsillar cancer of the right tonsil - my last treatment was 1 1/2 years ago. I was treated at Memorial Sloan Kettering and so far, so good. Regarding the PEG tube, the best thing that I did was to listen to my Oncologist and to have the tube put in before my treatments started. Keeping your weight up is very important - even with the PEG tube, I lost around 40 lbs! It's going to be very hard, if not impossible for him to eat (at least it was for me). I received two doses of chemo and six weeks of agressive radiation - I was 44 years old so they gave me an extra high dose because of my good physical condition. I didn't get a neck dissection. I am now living with dry mouth, trismus, some difficulty in swallowing but consider myself lucky. I hope this helped. Mustangfastback Sun, 09 Jul 2006 00:00:00 GMT Three weeks ago I was diagnosed with cancer in my left tonsil. I discovered it by locating a lump on my neck. Apparently a cyst grew around the cancer in my lymph node making it visibly noticeable to me. Other than that I feel like I always have. I am physically fit, eat well, am 5'5 and 135 lbs. I did however smoke for 6 years about 25 years ago. Does anyone know the cause of this disease? Also, I am starting radiation this monday yet I was not told to bulk up on my weight before hand. Should I? Queenie45 Queenie45 Thu, 13 Jul 2006 00:00:00 GMT It is already the end of July so this might be late. Last year March 2005 I had modified radical surgery on my left side of my neck, and also had my tonsil taken out, where ther was a 2cm tumor. I also had 54 lymph nodes taken out but thank God only one was positive for cancer and was still encapsulated. Still, at 4cm I was the equivavlent of a stage Va. Based on the surgury at UCSF (they have a great head and neck oncology center, I had IMRT but no chemo. In any event, hearing about the stories from the side effects of radiation, and givrn that I'm a small guy already, I decided to bulk up. This eas had to do because I had my tonsils out the same time they did the neck survey and it was already difficult swallowing from the tonsil surgury. However, I remained determined to maintain my weight and prepared a weekly excercise and diet schedule whcih I followed religiosly for the seven week radiation therapy and beyond. The matrix check-off list I made had a daily check-off column for eating, e,g, what foods, how much calories, carbs, etc.. There was a minimum my nutritionist set for each day for weight maintenance. If it went down, my calorie requirement went up. I also excercised twice a day, mostly light weightsm walks and push-ups. Also took a lot of vitamins, includingfish oil and a daily vistimin supplement. I also took ambien and xanax to sleep, and salagen to help stimulate salivary glands. Most of my meals were blended meat and veggie - not visually appealing, but better than getting a feeding tube, which I was dead-set trying to avoid. Depite the trouble swallowing, the mouth sores,etc, I was able to keep my weight the same, which my doctors were pleased. I celebrated my one year anniversary from the end of my treatments last June, and they say that the critical date for head and neck patients is two years as the incidents of new cancers fell dramatically. I hope so, as I coach my son's little league team here in Hawaii and he wants me to teach him to surf and scuba. I see my ENT each month, my oncologist every three months, then I fly to San Francisco to see my surgeon and radiologist very six months. My biggest take-way from my experience to that YOU are the one that has to take charge of your own care and coordination among the doctors. In their best of hearts, there are just people, and they make unintentional mistakes. Question everything and understand as much as you can. This will in reality an be an on-going process in order to beat this monster. I am so far and I am being viligent, and I try to enjoy my friends and family as much as I can. they are a great support network.Live your life so they may enjoy your company and less to share your concerns, although they will be there for that. Good luck and I hope you are able to keep your weight up. There isnt a real concensus on what causes this type of cancer. Heah and neck cancers represent anout 35-40,000 per year, about 10-15,000 die from it. The leading cause is alcohol and tobacco. The doctors say that discontinuing such behaviour significantly increases your survival. Beer and wine in minimal amounts appear ok, but distilled hard liqour is probably best to be avoided. Good luck! Aloha, Honolulu Joe Honolulu-joe Mon, 31 Jul 2006 00:00:00 GMT Who knew tonsil cancer even existed? I am a caregiver to my 41-year-old boyfriend who never smoked, did drugs and is totally athletic. On Memorial Day weekend he moved in with me from the LA area to northern california and started a new job the following Monday. On July 4th weekend he noticed a swollen gland in his neck. He went to his primary care doctor. She sent him home with antibiotics and referred him to a head and neck surgeon. The next week the surgeon did a fine needle biopsy of the neck and was encouraged when he got fluid. He said there was a small possibility there was cancer. He ordered a CAT scan two days later and as we were standing in line, the doctor came to get us and told us the bad news--squamous cell carcinoma of the tonsil. The following week, my boyfriend had surgery to remove the mass, the tonsil, and to do a neck dissection. He was in the hospital about 2 days. The following week we went to oncology and radiation oncology and got the treatment news. Unfortunately, the margins of the cancer were as good as they had hoped. He starts radiation and chemo concurrently Sept. 5 He will have a feeding tube inserted before he actually needs it. He will have radiation everyday for 7 weeks and 3 4-hour chemo treatments within the 7 wks. He will be off work for 2 months and I will be his caregiver. The doctors painted a vivid picture of how rough the treatments will be. He's bulking up on food now. They don't want him to lose any weight (He's 6'2 190) so I am making all his favorites now. His best friend also planned a guy weekender for him in one year. The doctors are sure they can cure him as he's young, and it did not spread to any other organs--beside the lymph nodes which they removed. Any other tips would be helpful! Liz Loves Dogs Wed, 23 Aug 2006 00:00:00 GMT Hello, It has been some time since I wrote or replied to any messages on this site, but yours caught my eye. My husband and I haven't been married for a full 3 years yet, but on my birthday in June 2004, I noticed a lump on the left side of his neck. Due to cell division, the lump appeared overnight. We had only been married 6 months, at the time. We went to our primary doctor, who sent us to an Ear, Nose, & Throat doctor, who then prescribed two rounds of antibiotics. The lump was the size of a golf ball and never responded to the meds. The doctor sent him for two needle biopsies. Both of them missed the lump completely. The lump stayed and the meds never helped. The doctor finally decided to remove it and send it off, just to be on the safe side. After the surgery, he told me that it looked like a nice pink cyst and not at all cancerous. A week later, when we saw him, in his office, to check the surgery site, he gave us the awful news that the cyst was squamous cell carcinoma... He was as shocked as we were. From that moment on, our life changed dramatically. My husband is now 54 years old and I am 53. We were sweethearts in 8th grade and finally found each other after years of unhappiness with other spouses. I must say this whole ordeal has made us stronger, but it was a huge challenge. One week after the first surgery, the doctor recommended that we search for the primary tumor. He suspected it was in my husband's left tonsil, but needed to do a tonsilectomy to make sure. Well, the tumor was there and he sent us straight to a radiation oncologist. He had to have 9 perfectly good jaw teeth surgically removed, then recover from the surgeries, and begin radiation for a full 7 weeks. The surgeries were in August, and the radiation started in October. They told us he would lose weight, no matter what. Another doctor gave us the option of chemo, but we refused it. We are glad now, because he was so very ill from the radiation, that he felt he would have died with both treatments. The cancer had not spread and he is now cancer- free. The radiation was horrible, honestly. Nothing or no one could prepare us for that 7 weeks, and beyond. Within two weeks, my husband got severe dry mouth, nausea, lost all taste buds, and began losing weight very rapidly. He was a large man and needed to lose weight, but this was very different than any diet on earth. He ended up losing 124 pounds, he fought getting the feeding tube, until he almost dehydrated twice. He couldn't put anything in his mouth for 8 months. His neck was severly burned on the inside and the outside and he threw up more than we could have ever imagined. The doctors try to prepare you, but there is no way, because everyone responds differently. It was much worse than we thought it would be. We know now that our decision not to do chemo, was the right one. We are Christians and our faith carried us through it all. We believe God was in charge all the way through the process. I could write a book, but there isn't enough space. In all, my husband had the tube for 8 months and the side effects of the radiation, are still bothering him. Some days are worse than others, but we believe he could be completely normal eventually. His doctor said it could be 5 years before he feels very normal again. He had to stop working and still hasn't returned. His strength is not back to normal, and his mouth and throat still give him lots of problems, on a daily basis. I had to learn more patience than ever before, too. There were times when I felt that no matter what I did to help him, it was just never enough. We cried many tears, and prayed constantly. He thought he would be back to normal within a year, but that was a joke, too. It has been two years since it all started, and he is still working through many difficult, physical things. He has had his tube out for about one year now and is eating again. He has gained some weight back, but never wants to be as large as he was before. He has to see the specialist on a regular basis for a total of 5 years, to watch for any changes in his throat. We have prayed for God to keep him cancer free so that we can enjoy each other now that we have found our true love. I will answer any other questions you have, so feel free to ask. I must go now and we will pray for you both. D.K. Marlya53 Sat, 26 Aug 2006 00:00:00 GMT hi Marla, Wow, what a story. The doctors readied us for the worst but as you say there is really no way one can prepare. I am not patient under the best circumstances so this will be a test. It was bad enough when he had the surgery to remove his tonsil. I wonder if your husband was given the daily injections to help with the salivary glands? It is injected every day for 7 wks. It is supposed to help. My beau will be getting those. He's now at the dentist getting all his teeth checked out and they are trying to figure out whether to pull his wisdom teeth now. My beau is 41 and athletic and the thought of all this to a man who never had any symptoms is so sad. Thank you for your story. Liz Loves Dogs Mon, 28 Aug 2006 00:00:00 GMT I had a cyst on my neck and had a dissection in May 2006 to remove it. All went well, I do have a scar that took 20 stitches and run along a crease in my neck. Recovery was quick. Hope that helps. Reiter27 Mon, 02 Oct 2006 00:00:00 GMT My father also a Vietnam Veteran who was exposed to agent orange was just diagnosed with squamous cell carcinmona of the tonsils. It has metastasised to his lymph nodes in the Right side of his neck and has 3 nodules in the upper lobe of his right lung.  Any info you could share that has been forwarded to you would be greatly appreciated.  Also any info on benefits from the VA would be appreciated.  Thank you so much.Shawny Nurseshawny Fri, 22 Dec 2006 00:00:00 GMT I am 64 yr old male who was diagnosed with tonsillar cancer. Operation remove 95 % of tumor. Do not know if cancer spread beyond tumor as yet. Doctors  have recommended 8 weeks radiation plus chemo. Why did you opt for only radiation ? Please anyone  describe long term side effects i.e. dry mouth, taste buds, mental  attitude, etc. Jbe1046369 Thu, 14 Jun 2007 00:00:00 GMT  On 3/19/2006 Jim48 wrote:I just finished 6 weeks of radiation. I did not elect chemo though it was recommended by chemo doctors. I felt the radiation doctors were comfortable with my decision. How ya doing?I am a 64 yr old male who has been diagnosed with tonsillar cancer. Surgery removed 95 % of tumor. Do not know as yet if tumor spread . Doctors have recommended radiation and chemo. Why did you opt for no chemo ? What are your the long term effects ; dry mouth, taste buds, mental attitude, etc ? Jbe1046369 Thu, 14 Jun 2007 00:00:00 GMT I Uunderwent surgery last week toremove a  tumor from my right tonsil that was diagnosed with squamous cell carcinoma. I was in Vietnam 1968 to 1969.  I am also a type 2 diabetic that has been attributed to Agent Orange.  I have a swolen lymphnode on my left neck they think  is cancerous waiting on biopsies to see whats next. Whether more surgery then radiation and chemo or just the radiation and chemo.  Great choices.There is some research being done to link tonsil cancer with Agent Orange. jmcelha Thu, 28 Feb 2008 00:00:00 GMT I have had a swollen left tonsil for 2+ years. A CT scan this past Saturday confirms that there is an inflammatory or neoplastic condition in my left tonsil. I see the doctor in two days to schedule surgery to remove the tonsils. I am scared. Throat cancer runs in my family. My grandmother and uncle both died young from it. I am a 32 yo female, 5'9 and only 130lb (I already lost 10lb in the past 3 months from feeling discomfort). I worry about the weight loss. Most of all I worry because I have two young children and am recently divorced. I currently live in New England, but originally I am from California. All my family is there. I am worried that if my tonsil come back positive, I should try to relocate as soon as possible. It's hard to try to stay positive and hope for the best, but I know something is wrong. Any single moms or women on this thread? ctgirl Tue, 04 Mar 2008 00:00:00 GMT  On 8/19/2002 Jane L. wrote:Michael, So sorry about your father. I am recovering from tonsil cancer, to be more specific, squameous cell carcinoma with extra nodal involvement. On March 1, I had a neck dissection and a month later began radiation which lasted 6 weeks. During that time, I had 4 sessions of chemo, using carboplatin. My treatments stopped on May 15. Everything happened at Mass General and Mass Eye and Ear in Boston. My case was determined to be a stage 4, because of the size of the lymph node involvement. However, my doctor and I are optimistic that I will survive for at least 10 years! I am 60 years old and generally healthy. My attitude is that I can "kick butt" when it comes to surviving this ordeal. I am not sure what info you are looking for, however, I can tell you that the only thing that has slowed me down more than I expected came AFTER the treatment was over. The two weeks following were very unpleasant, with nausea, vomiting, very sore throat, generally feeling rotten. I am still using my Gtube for nutrition, and while I can swallow, I can't really eat anything yet without burning and swelling the following day. I am told that healing time varies but by THanksgiving I should be eating turkey! I hope that is true. I find that the most frustrating and disspiriting thing to me is this period of healing. While the wonderful people at MGH prepared me for everything there, no one ever told me about the long days and weeks and months at home following , when I would want to be "normal" again...with regard to eating, talking, exercising and working. Little by little, my energy is coming back....my throat has days without hurting, but fighting depression during this part has been a huge task. I hope your father has a great support system, because that is a key factor.... Good luck to him and to you and your family. JL  JL,I hope you are doing well.  Do you by chance have any opinions on diets?  Cutting out sugars, drinking heavy amounts of probiotic fluids, filtered water?  I've done some research that supports detoxing your system so cancer cells cannot matastisis. KL jmhkol Mon, 17 Mar 2008 00:00:00 GMT I know you posted in 2005 but my father was just diagnosed and is a Vietnam Veteran.  He is due for surgery on Sept 18, 2008.  I hope you are doing well and if you see this message if you could write back and let me know how you are doing and what we can expect I would appreciate it.  He is having all of his treatments at the VA....did you also have this done at a local VA??  they have been really good to him there for years as he is a disabled veteran but he's never had anything this serious before so I hope they do well.  foofurr2 Tue, 16 Sep 2008 00:00:00 GMT