CancerCompass message board discussion started by DeniseB on 4/14/2008 http://www.cancercompass.com/message-board/message/all,23028,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have been reading the message board for a couple of weeks. You are all wonderful to share your stiories, encouragement and advice. I am scared to death and have not had the courage to write. I don't quite understand why putting this to paper is so frightening...but...here it goes....Our nightmare has just begun...my husband has tonsil cancer. He is 53 years old, we have been married almost 25 years and have two daughters--19 and 16.  It all started Feb 21st--he came in from playing tennis when I noticed he had an egg sized lymph node on the right side of his neck. (It hadn't been there long because he had been to the dentist on Jan 23rd and had a routine teeth cleaning and the doc checks the neck, thyroid ,et. ) He went to the doctor the next day. After  biopsies, CAT scans and the a tonsillectomy on 4/4 we have a dx. The staging is incomplete because he will go for a PET Scan later this week, but it looks like stage III at best. The plan is for nine weeks of chemo with Cisplan, FU-5, and one other drug begins just in time for "National Head and Neck Cancer Week" on 4/21 and then 6 weeks of IMRT radiation with chemo. Our children do not know about the cancer, but we plan to tell them tommorrow...we've had to come up with a reason for our olderst daughter to come home from college.I am a critical care RN, but I'm clueless to the day in/day out issues of the terrible situation.Please keep your stories going. I hope eventually my husband will start reading. Right now he is too scared...the docs have put him on Ativan and Paxil last week---hopeflly he can get his head above water soon. You are all a blessing for sharing your situation!DeniseB DeniseB Mon, 14 Apr 2008 00:00:00 GMT I'm sorry to read about your husbands cancer.  Cisplatin is a butt kicker.  Ask about Erbitux.  It's expensive.  My doctor had to fight with my insurance company.  The doc won and I'm glad he did.  I still had two rounds of Cisplatin, but eight rounds of Erbitux.Good luck and hang in there.Tom ThreePutt Mon, 14 Apr 2008 00:00:00 GMT my heart goes out to you.  the first few weeks are very scary.  my boyfriend's situation is similar except he has an unknown primary.  he had the first enlarged lymph node removed and biopsied- then another larger tumor was found in his neck.  he went through induction chemo at dana-farber in boston- 5-fu, erbitux, cisplatin and taxotere for nine weeks. at the end of that he had another PET scan and that second tumor was almost gone!  He is now almost done with 35 rad treatments.  his oncologist says this is VERY curable even in stage IV - which is our diagnosis.when he was first diagnosed he started reading info online and it became overwhelming for him so he stopped.  i found this message board and it is a wealth of info and support.  so now i do the reading and i fill him in on things that i think will be good for him to know. everyone has their own comfort level.the treatment is tough...there is no getting around it.  keep us all posted - ask questions - chances are good someone else here has a helpful hintbe sure to take care of yourself as well.~meesh meesh Mon, 14 Apr 2008 00:00:00 GMT Hi, Denise.I'm 6 months out of treatment for tonsillar cancer (stage 4a). I'm 52 and I went through 3 doses of cisplatin and 7 weeks of IMRT. I'm doing well, clean CT and PET scans, and clean biopsies as well.Cisplatin is a butt kicker, expect moderate to severe nausea, ask the docs about antinausea meds if they dont volunteer them. I took Ativan, Emend, Zofran and a couple of others. Keep barf buckets handy.The radiation will bring it's own set of problems that have been well documented in posts here. Make sure you take the time to browse through them. I wish I had found this site earlier in my journey through cancerland, but I didnt til I was almmost done with treatment.Cancer is frightening when you first hear it, but tonsillar cancer is VERY treatable. It's not easy, but it is very doable. Just be there for your husband, he'll need you more than he will admit. And we'll all be here for you when you need us.Best wishes, and good luck.Mike micromisterphone Mon, 14 Apr 2008 00:00:00 GMT Hey there!  First of all, as you can see - you are NOT alone.  Ever.  So, when things get hard, just keep that in mind.My husband was diagnosed with SSC of the tonsil just a few weeks ago.  Had a biopsy on March 12th and tonsillectomy and neck disection on Match 14th.  We are at a stage 4, primary was very small, but the cancer had spread to 15 of the 49 lymph nodes we removed.  He starts 35 Tomo-Therapy (radiation) next Tuesday, and will have 3 infusions of Cisplatin on weeks 1, 4, and 7 of his radiation.  He also had to have all of his top teeth pulled about 10 days ago.  This is a very scary thing we are going through.  But we will all make it!!!!!  I can't tell you all the excellent advise, support, tips and tricks I have found on this site.  My best advise to you is knowledge.  It can be very overwhelming, so do it at your own pace.  Just my opinion here, but I feel the more I understand about his cancer and the treatments, the better I am able to help him.  You have GOT to take time for yourself, too.  Even 5 minutes a day.  Take care of yourself so you can take care of him!  Don't be afraid to ask for help!   Positive thoughts!  Stay strong and hang in there! Babzilla Mon, 14 Apr 2008 00:00:00 GMT Hi Denise,I'm sorry to hear of your husband's diagnosis. Just hang in there. This is the worst part. Before treatment there is nothing but fear and uncertainty. Once treatment starts you go into "corrective" mode and you're actively taking care of the problem. Not that treatment will be easy but with the help of the medical team and boards like this it is very doable. I am 56 years old and 2+ years out of treatment for Stage IV tonsillar CA. I have never felt better in my life. I run 3-5 miles every other day and lift weights on the days in between. I'm in better shape than I was at 20. I love and appreciate every moment of my life now which is something that I've never felt before. My treatment was the same as your husband's (Cisplatin, 5-FU, 35 Rad, PEG tube, etc...) and it was tough, but within a year I was back to what has become my new normal. If I can do it, so can he.I wish you the best of luck. If you need anything check in with this board. The folks here are the BEST!!!!Good Luck,Joe    Defjoeb Mon, 14 Apr 2008 00:00:00 GMT Im relatively new to this site as well. Isn't it great. I had salivary gland cancer, but i had cisplatin and 5fu and 35 rads and neutron therapy. You dont loose your hair with that type of chemo. so that was one less thing to worry about. Treatment is rough. I took one week at a time and when I found that hard, concentrated on one day at a time then one hour and before I knew it treatment had finished, I kept a diary on how I felt. When you look back on it you see how far you have come. Get him to find a safe place. Mine was my husband farm on an island in Scotland. I used to go there in my mind and walk over the fields to the beach when things were rough.  Also my friend taught me breathing techniques which I used through chemo to help with nausea etc. I agree about having time for you!!! My husband felt that everyone was concerned for me but forgot to ask how he was coping? and at times he didnt cope.With regards to your children tell them the truth. My children were 19, 21 and 23 at time and we tried to protect them and it only made them worry more cos they werent sure if we were telling them the truth. so in the end we told them everything. My daughter settled me in to hospital then took herself of to start uni that day. i felt terrible but she coped. She was a star and looked after me like a china doll. One of my sons world fell apart and left uni cos he couldnt cope. A year later his life is back on track and heading back to uni. The other boy never said much. He was deep about his thoughts.This has made us much closer as a family and Ive just had my year scans and all is clear. so look forward to that day and BE POSITIVE!!!God Bless xxxxx  BUTTERFLYDANCER Wed, 16 Apr 2008 00:00:00 GMT Hi Denise, I am sorry about your husband's diagnosis. I know I kept wishing it was all a bad dream and would go away! My husband was also diagnosed with Tonsil cancer. He was never sick, loved to play tennis competitively 4 to 5 times a week, ate plenty of fruits and vegetables, did not smoke or drink, and yet got this type of cancer. We have been married for over 20 years and have two teenagers. We told them right away. You cannot live in the same house and not tell them! His condition will change so rapidly, specially his energy level, that your kids will be worried to death if they don't know what's going on. We explained the diagnosis, and course of action to them. Then as needed, I explained what side effects might be coming on, so they would not be scared. He had been clearing his throat for about 4 months or so, kept having some sore throat, and a lot of post nasal drip. All doctors told him he was fine. He had his annual checkup and 6-month dental cleaning and screening, everything was normal. Then within a month of that, went to an ENT surgeon 3rd week of January. He saw something wasn't right. Odered CT scan and biopsy, and turned out to be cancer... Dodctors told him he should plan to be off from work for about 3 months. For the first 3 weeks, he was working amost full-time from home. But after that it's been on and off. Sometimes not at all for several days, sometimes just an hour of e-mail. I went on FMLA myself, so I could have the time to drive him to his daily radiation sessions, and took 3 or more days off after each chemo session. We're lucky that we have two large cancer treatment facilities within 20 minutes of our home.His course of treatment was 6 weeks of radiation combined with 3 rounds of Cisplatin. They never told us what his staging really was. They said since there was no surgery, they could not really stage it, but on the first chemo day, the medication list sheet stated stage 2. The mass was about 3X3X2 cm on the biopsy. He has several dental implants and to prevent extra burn due to beam reflection off of the posts, he was referred to a dentist who specializes in radiation care. They made him very thick dental trays to wear during radiation. This is to protect the teeth and in the case of metals in the mouth, to protect the cheeks as well. I made myself a small notebook with tabs for provider, medication/side effect, test results. I also got a daily calendar. Both were of great help to me. At every turn they want to know what medication he's on, which at times may change several times within a week. I used the calendar to keep track of number of doses I had given him of each medication, and once he went on PEG tube, of food and water intake. He started on PEG about 3 weeks into treatment. He hated the idea and put it off as much as possible, but it's been a life saver. The high-dose radiation made it impossible to eat, as his throat became irritated. He did drink water throughout, and still does. He finished treatment two weeks ago. Initial shock is terrible, treatment is intense, but you can get through it. We're now in the post-treatment period. I won't call it recovery yet, as he's having too much trouble with very thick mucus/saliva due to radiation. He lost 14 lds alltogether, so not bad, and only some facial hair at the radiation site, not the "hairless" image of some other cancer treatments at all. His neck did not burn, but looks very very tanned. They gave him Aloe gel and Aquaphor to use, and that seems to have done the job.As an RN you know different patient react differently to the same medication. You'll need to be his advocate on what does or does not work for him. We tried different types of anti-nausea medications. Steroids did not work for him. They effected his moods too much. Zofran, and Ativan work well. Most of his nausea is due to radiation, not chemo and still continues, but is no longer severe. Seems like once the nerves in that area are effected, it takes a while for them to calm down. The worse part so far has been the very thick mucus. I was worried he would choke several times. One doctor recommended a suction machine, but he won't try it. He is using Tussin to thin it out a little, and sips on club soda as well. I hav to say, about 4 days ago, he stopped getting worse, and is slowly getting better. He can stand sound and light and color now. After chemo those were out. Strong odors still bother him, so I have not cooked in over 6 weeks, but that may not be so bad come to think of it :-)Take a deep breath, beleive all of us that say this can be cured, take care of yourself so you can look after him, and get your kids envolved. They'll feel a lot better if they're helping care for him. My younger one sits with her dad in the evenings for an hour or so. They enjoy eachother's company, and I get an hour to myself. My older one runs most of my errrands and does the grocery shopping.Hang in there, we're all here for you. Remember, tomorrow will come, the sun will rise, and together you will get through this... Zeebra Wed, 16 Apr 2008 00:00:00 GMT  On 4/16/2008 Zeebra wrote:Hi Denise, I am sorry about your husband's diagnosis. I know I kept wishing it was all a bad dream and would go away! My husband was also diagnosed with Tonsil cancer. He was never sick, loved to play tennis competitively 4 to 5 times a week, ate plenty of fruits and vegetables, did not smoke or drink, and yet got this type of cancer. We have been married for over 20 years and have two teenagers. We told them right away. You cannot live in the same house and not tell them! His condition will change so rapidly, specially his energy level, that your kids will be worried to death if they don't know what's going on. We explained the diagnosis, and course of action to them. Then as needed, I explained what side effects might be coming on, so they would not be scared. He had been clearing his throat for about 4 months or so, kept having some sore throat, and a lot of post nasal drip. All doctors told him he was fine. He had his annual checkup and 6-month dental cleaning and screening, everything was normal. Then within a month of that, went to an ENT surgeon 3rd week of January. He saw something wasn't right. Odered CT scan and biopsy, and turned out to be cancer... Dodctors told him he should plan to be off from work for about 3 months. For the first 3 weeks, he was working amost full-time from home. But after that it's been on and off. Sometimes not at all for several days, sometimes just an hour of e-mail. I went on FMLA myself, so I could have the time to drive him to his daily radiation sessions, and took 3 or more days off after each chemo session. We're lucky that we have two large cancer treatment facilities within 20 minutes of our home.His course of treatment was 6 weeks of radiation combined with 3 rounds of Cisplatin. They never told us what his staging really was. They said since there was no surgery, they could not really stage it, but on the first chemo day, the medication list sheet stated stage 2. The mass was about 3X3X2 cm on the biopsy. He has several dental implants and to prevent extra burn due to beam reflection off of the posts, he was referred to a dentist who specializes in radiation care. They made him very thick dental trays to wear during radiation. This is to protect the teeth and in the case of metals in the mouth, to protect the cheeks as well. I made myself a small notebook with tabs for provider, medication/side effect, test results. I also got a daily calendar. Both were of great help to me. At every turn they want to know what medication he's on, which at times may change several times within a week. I used the calendar to keep track of number of doses I had given him of each medication, and once he went on PEG tube, of food and water intake. He started on PEG about 3 weeks into treatment. He hated the idea and put it off as much as possible, but it's been a life saver. The high-dose radiation made it impossible to eat, as his throat became irritated. He did drink water throughout, and still does. He finished treatment two weeks ago. Initial shock is terrible, treatment is intense, but you can get through it. We're now in the post-treatment period. I won't call it recovery yet, as he's having too much trouble with very thick mucus/saliva due to radiation. He lost 14 lds alltogether, so not bad, and only some facial hair at the radiation site, not the "hairless" image of some other cancer treatments at all. His neck did not burn, but looks very very tanned. They gave him Aloe gel and Aquaphor to use, and that seems to have done the job.As an RN you know different patient react differently to the same medication. You'll need to be his advocate on what does or does not work for him. We tried different types of anti-nausea medications. Steroids did not work for him. They effected his moods too much. Zofran, and Ativan work well. Most of his nausea is due to radiation, not chemo and still continues, but is no longer severe. Seems like once the nerves in that area are effected, it takes a while for them to calm down. The worse part so far has been the very thick mucus. I was worried he would choke several times. One doctor recommended a suction machine, but he won't try it. He is using Tussin to thin it out a little, and sips on club soda as well. I hav to say, about 4 days ago, he stopped getting worse, and is slowly getting better. He can stand sound and light and color now. After chemo those were out. Strong odors still bother him, so I have not cooked in over 6 weeks, but that may not be so bad come to think of it :-)Take a deep breath, beleive all of us that say this can be cured, take care of yourself so you can look after him, and get your kids envolved. They'll feel a lot better if they're helping care for him. My younger one sits with her dad in the evenings for an hour or so. They enjoy eachother's company, and I get an hour to myself. My older one runs most of my errrands and does the grocery shopping.Hang in there, we're all here for you. Remember, tomorrow will come, the sun will rise, and together you will get through this...  DeniseB Thu, 17 Apr 2008 00:00:00 GMT  On 4/17/2008 DeniseB wrote: On 4/16/2008 Zeebra wrote:Hi Denise, I am sorry about your husband's diagnosis. I know I kept wishing it was all a bad dream and would go away! My husband was also diagnosed with Tonsil cancer. He was never sick, loved to play tennis competitively 4 to 5 times a week, ate plenty of fruits and vegetables, did not smoke or drink, and yet got this type of cancer. We have been married for over 20 years and have two teenagers. We told them right away. You cannot live in the same house and not tell them! His condition will change so rapidly, specially his energy level, that your kids will be worried to death if they don't know what's going on. We explained the diagnosis, and course of action to them. Then as needed, I explained what side effects might be coming on, so they would not be scared. He had been clearing his throat for about 4 months or so, kept having some sore throat, and a lot of post nasal drip. All doctors told him he was fine. He had his annual checkup and 6-month dental cleaning and screening, everything was normal. Then within a month of that, went to an ENT surgeon 3rd week of January. He saw something wasn't right. Odered CT scan and biopsy, and turned out to be cancer... Dodctors told him he should plan to be off from work for about 3 months. For the first 3 weeks, he was working amost full-time from home. But after that it's been on and off. Sometimes not at all for several days, sometimes just an hour of e-mail. I went on FMLA myself, so I could have the time to drive him to his daily radiation sessions, and took 3 or more days off after each chemo session. We're lucky that we have two large cancer treatment facilities within 20 minutes of our home.His course of treatment was 6 weeks of radiation combined with 3 rounds of Cisplatin. They never told us what his staging really was. They said since there was no surgery, they could not really stage it, but on the first chemo day, the medication list sheet stated stage 2. The mass was about 3X3X2 cm on the biopsy. He has several dental implants and to prevent extra burn due to beam reflection off of the posts, he was referred to a dentist who specializes in radiation care. They made him very thick dental trays to wear during radiation. This is to protect the teeth and in the case of metals in the mouth, to protect the cheeks as well. I made myself a small notebook with tabs for provider, medication/side effect, test results. I also got a daily calendar. Both were of great help to me. At every turn they want to know what medication he's on, which at times may change several times within a week. I used the calendar to keep track of number of doses I had given him of each medication, and once he went on PEG tube, of food and water intake. He started on PEG about 3 weeks into treatment. He hated the idea and put it off as much as possible, but it's been a life saver. The high-dose radiation made it impossible to eat, as his throat became irritated. He did drink water throughout, and still does. He finished treatment two weeks ago. Initial shock is terrible, treatment is intense, but you can get through it. We're now in the post-treatment period. I won't call it recovery yet, as he's having too much trouble with very thick mucus/saliva due to radiation. He lost 14 lds alltogether, so not bad, and only some facial hair at the radiation site, not the "hairless" image of some other cancer treatments at all. His neck did not burn, but looks very very tanned. They gave him Aloe gel and Aquaphor to use, and that seems to have done the job.As an RN you know different patient react differently to the same medication. You'll need to be his advocate on what does or does not work for him. We tried different types of anti-nausea medications. Steroids did not work for him. They effected his moods too much. Zofran, and Ativan work well. Most of his nausea is due to radiation, not chemo and still continues, but is no longer severe. Seems like once the nerves in that area are effected, it takes a while for them to calm down. The worse part so far has been the very thick mucus. I was worried he would choke several times. One doctor recommended a suction machine, but he won't try it. He is using Tussin to thin it out a little, and sips on club soda as well. I hav to say, about 4 days ago, he stopped getting worse, and is slowly getting better. He can stand sound and light and color now. After chemo those were out. Strong odors still bother him, so I have not cooked in over 6 weeks, but that may not be so bad come to think of it :-)Take a deep breath, beleive all of us that say this can be cured, take care of yourself so you can look after him, and get your kids envolved. They'll feel a lot better if they're helping care for him. My younger one sits with her dad in the evenings for an hour or so. They enjoy eachother's company, and I get an hour to myself. My older one runs most of my errrands and does the grocery shopping.Hang in there, we're all here for you. Remember, tomorrow will come, the sun will rise, and together you will get through this...Dear Zeebra,THANK YOU for your response...you are the second touch of God's hand just this morning. I am absolutely shaking--in a good way!!!! Yesterday I spent hours on the telephone-first speaking with two radiation oncologist. We got their names through mutal friends and profesional connections. They disagreed with our present doctors about everything from the plan of care, to the time line of treatment, to chemo meds. to delayed radiation treatment. Larry was scheduled for PET and CAT scans, lab work, pre-anesthesia workup for today and surgery for Friday, chemo with three drugs ("too toxic")on Monday, 15 week treatment course versus a plan of "just" 6 weeks---we've cancelled everything! We are going out of state to receive what sounds like identical treatment that your husband has received! I'd love to know through a private email who you guys are seeing and where--it just sounds so similar.We  have talked with our children and they are both well informed now. They are troopers. We will involve them, as you suggested, as much as possible--I would not want them not to feel valued!!We are going to look into FMLA--me definitely.. I am not sure what is best for Larry due the fact we will be relocating out of state for his treatment. He could do much of his work by computer and I could be his voice/secretary by telephone. Do you continue to receive full salaried income with FMLA?It will be a great bonus if he does not lose his hair. I'll check into the radiation dental trays ASAP. I'm hoping we will move forward with a PEG. It will guarentee hydration and nutrition and possibly prevent aspiration which leads to pneumonia.  Yeah, not cooking would not bother me a bit either---when I win the lottery that would be the first person I would hire--a cook:)!!I'm very happy to hear your husband is feeling stronger!! Hang in there --you are on the slide into home plate!!!!DeniseB  DeniseB Thu, 17 Apr 2008 00:00:00 GMT 7 mo. out 3 cycles cemo 5fu cisplatian and toxitere 35 rad treatments with 7 more cisplatian treartment 1 a week peg tube rough road and finished alive cured and cancer free... hang tough and kick cancers ass Aviatorrandy Thu, 17 Apr 2008 00:00:00 GMT Hi, I am a newbie too and scared too.My fiance was diagnosed with cancer of the left tonsil, which was removed. It spread to the lymp node nearest the tonsil on the left side of his neck; the lump is HUGE (about the size of a baseball)...he went to doctor after doctor, and they all gave him antibiotics until he was finally diagnosed. He has not yet been staged, there was no other head/neck involvement, however. The treatment sounds exactly like what you all are doing (or have done) except that they want to pull out all his teeth first!I have a question: Why did they leave the malignant lymph node in his neck? They did take the tonsil. p.s. We are both 62 and found each other after previous marriages ended badly. We are each other's lifeline, and I know you all know how scared we both are. calyndula Fri, 18 Apr 2008 00:00:00 GMT my boyfriend had one tumor removed and biopsied- that was how he was diagnosed..then another larger tumor was found...they didnt remove it.  he had 9 weeks of induction chemo which shrunk the tumor down to nearly nothing - he is now going through radiation.  when all is done he will have scans again...at that time they will do a neck dissection if they see even a speck of tumor left.  they felt it was better to shrink it than to have another surgery at that time.he did not have any teeth removed prior to treatment...just had a thorough exam and cleaning prior to the start. meesh Fri, 18 Apr 2008 00:00:00 GMT they try to shrink it down to the size of a pea with cemo and then they kill the hell out of it with radiation... don,t worry they know what they are doing...hang tough and before you know it your done and cancer free... Aviatorrandy Fri, 18 Apr 2008 00:00:00 GMT  On 4/18/2008 calyndula wrote:Hi, I am a newbie too and scared too.My fiance was diagnosed with cancer of the left tonsil, which was removed. It spread to the lymp node nearest the tonsil on the left side of his neck; the lump is HUGE (about the size of a baseball)...he went to doctor after doctor, and they all gave him antibiotics until he was finally diagnosed. He has not yet been staged, there was no other head/neck involvement, however. The treatment sounds exactly like what you all are doing (or have done) except that they want to pull out all his teeth first!I have a question: Why did they leave the malignant lymph node in his neck? They did take the tonsil. p.s. We are both 62 and found each other after previous marriages ended badly. We are each other's lifeline, and I know you all know how scared we both are.I am so sorry to hear about your situation too!  Ask your docs all of your questions and keep asking them to clarify until you feel satisfied!!!!  Also, you have come to the right place---this is a great site to get a lot of info on the day in/day out difficulties from first hand experts---patients.My understanding is that if you have gum or dental disease the affected teeth need to be pulled and the surrounding tissue needs to heal prior to radiation. The radiation prevents healing of the gums and this can lead to infections within the jaw bones. If the bone becomes infected it could be vey serious and lead to loss of the entire jaw--- "jaw death".Second question concerning surgery ---removing the tonsil but not the node. The tonsil is classified as a biopsy for diagnosis. Did they do a needle biopsy of the lymph node? It is pretty accurate to assume the huge lymph node is in response tp the tonsil cancer. Different docs treat differently, so some do neck dissections and some irradiate the lymph nodes and they will shrink away if the treatment is sussessful.Lymph nodes are very vascular and transport the cancer cells as they pass through to the rest of the body, so that is why chemo is necessary--to rid the blood of the cancer cells. Check with your doctors to see what is next --PET scan to look for more nodes, neck dissection, chemo/radiation?? Please keep in touch,DeniseB DeniseB Sat, 19 Apr 2008 00:00:00 GMT  On 4/19/2008 DeniseB wrote: On 4/18/2008 calyndula wrote:Hi, I am a newbie too and scared too.My fiance was diagnosed with cancer of the left tonsil, which was removed. It spread to the lymp node nearest the tonsil on the left side of his neck; the lump is HUGE (about the size of a baseball)...he went to doctor after doctor, and they all gave him antibiotics until he was finally diagnosed. He has not yet been staged, there was no other head/neck involvement, however. The treatment sounds exactly like what you all are doing (or have done) except that they want to pull out all his teeth first!I have a question: Why did they leave the malignant lymph node in his neck? They did take the tonsil. p.s. We are both 62 and found each other after previous marriages ended badly. We are each other's lifeline, and I know you all know how scared we both are.I am so sorry to hear about your situation too!  Ask your docs all of your questions and keep asking them to clarify until you feel satisfied!!!!  Also, you have come to the right place---this is a great site to get a lot of info on the day in/day out difficulties from first hand experts---patients.My understanding is that if you have gum or dental disease the affected teeth need to be pulled and the surrounding tissue needs to heal prior to radiation. The radiation prevents healing of the gums and this can lead to infections within the jaw bones. If the bone becomes infected it could be vey serious and lead to loss of the entire jaw--- "jaw death".Second question concerning surgery ---removing the tonsil but not the node. The tonsil is classified as a biopsy for diagnosis. Did they do a needle biopsy of the lymph node? It is pretty accurate to assume the huge lymph node is in response tp the tonsil cancer. Different docs treat differently, so some do neck dissections and some irradiate the lymph nodes and they will shrink away if the treatment is sussessful.Lymph nodes are very vascular and transport the cancer cells as they pass through to the rest of the body, so that is why chemo is necessary--to rid the blood of the cancer cells. Check with your doctors to see what is next --PET scan to look for more nodes, neck dissection, chemo/radiation?? Please keep in touch,DeniseB thank you, you have been incredibly helpful and god bless all here!  calyndula Wed, 23 Apr 2008 00:00:00 GMT I realized today that to my horror, in my own terror and anxiety, I hijacked Denise's thread. Denise, I am so sorry. I am praying for you and your husband daily. I will start my own thread about my fiance, and forgive me for taking over your thread! :-( calyndula Tue, 06 May 2008 00:00:00 GMT