Tonsil Cancer Diagnosis

Hi everyone.  I just found out on Monday this week that I have tonsil cancer (left tonsil)...bummer.  I went to see an ENT last week (Wed) due to my left tonsil being huge for the past several months.  He took a biopsy that day and I found out this week that it is cancer.  I had a head and chest CT scan yesterday and my doctor says it's come back clean so he thinks the cancer is just in the tonsil itself and hasn't spread.  He is recommending I have surgery to take out my tonsils as well as a neck disection to make sure the cancer hasn't spread to any lymph nodes.  He says sometimes the CT scans don't pick up everything so he wants to do the neck disection just to be on the safe side.  If he doesn't find any more cancer cells in the lymph nodes, then most likely the surgery to remove the tonsils is all that will be required.  If he finds additional cells, then more than likely radiation will follow the surgery.

Other options he mentioned was to do no surgery and just start radiation to zap the cancer or to do a combo of radiation and chemo (he thinks this would be overkill).  To me the surgery route sounds the best at this point, but it's all a big blur at the moment.  So glad I found this site.  I am hoping to hear from others that have gone through something similar that may be able to offer some input/advice on the matter.  I've read a bunch of posts on this site and others about tonsil cancer so I know a little of what to expect, but any thing anyone would like to share will be greatly appreciated.

I guess at this point I'd like to know what to expect from a tonsilectomy and neck disection.  What is recovery like and how long should I expect it to take?  The Dr. says to expect to take about 10 days off from work for recovery.  Does this sound about right?

I just want to say thanks in advance for this site and for all of you that take time to help others like myself figure all this stuff out.

God Bless,

Greg

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Comments

  • osmotar
    osmotar Member Posts: 1,006
    Tonsil Cancer

    Hi Greg,

     

    I was diagnosed in 2011 with stage 4a squamus cell of the right tonsil, what triggered my diagnosis find was that it had gone to one lymph node, and appeard as a lump under my jaw line, about the size of a quarter, my PCP wasn't sure what it was , so sent me to an ENT who scoped and asked if I realized my tonsil was enlarged and inflamed, I had not trouble swallowing , no cough or anything else. He did his due diligence in sending me for a fine needle aspiration of the lump, that came back inconclusinve , he then sent me for a PET scan , he called and said he wanted to remove my tonsils. This in itself is a pain as an adult, when I came out of surgery , my daughter was there and said mom he only removed your right tonsil, but wants to see you in 2 weeks. The recovery from the surgery wasn't bad, painful to eat and swallow for a bit but yes I'd say it was a good 10 days to feeling better and not taking any pain meds. When I went to see him on my follow up thats when he told me I had cancer, not a smoker or a drinker , and that he had already set me up for a oncology visit. I see the oncologist and she is talking talking, and I ahve no clue what she is even saying, almost like she was speaking in a foreign language. She did tell me I was going to have the mother of all treatments, I had chemo every 21 days for 3 months, taxatore, cisplatin, and then a 5FU pump from monday thru friday.Afeter the first chemo the lump at my neck was gone, there was never any discussion of a neck disection. At the end of chemo I then went to  radiation everyday for 7 1/2 weeks, with 1 infusion of carboplatin for every week of radiation. Fortunately I was very luck that I didn't become sick from the tratemets, I lost my hair, lost my taste, but was also proactive , I asked questions , wrote lists , had someone go to each treatment and doctors visit with me in the event there was something I forgot. Is the treatment hard yes, is it doable yes, it is always easy no, there are others who struggled thru treatments, there are potential side effects long after treatments end. It took a good 6 months or a bit longer for my taste to come back, there are still some things that I ate prior to treatment s that still leave a funny taste in my mouth, I have a small bit of neuropothy in one of the toes on my right foot, managed witmeds. At the end of December it will be 3 years out of treatment and cancer free, all scans since then ahve been clean, I still go every 6 months to see my ENT and oncologist for follow-up tests and check ups. In the end I was lucky, but I still believe that when my ENT saw the tonsil he knew what it was but wanted to cover all the bases, ultimately we put our lives in the. hands of all these folks.

    Good luck on your kourney, this is a great site to ask questions, someone will always know what your going thru, your not alone , we are all warriors  in this battle with the beast.

    Blessings and light

     

    Linda.

     

     

  • gdawg55
    gdawg55 Member Posts: 40
    osmotar said:

    Tonsil Cancer

    Hi Greg,

     

    I was diagnosed in 2011 with stage 4a squamus cell of the right tonsil, what triggered my diagnosis find was that it had gone to one lymph node, and appeard as a lump under my jaw line, about the size of a quarter, my PCP wasn't sure what it was , so sent me to an ENT who scoped and asked if I realized my tonsil was enlarged and inflamed, I had not trouble swallowing , no cough or anything else. He did his due diligence in sending me for a fine needle aspiration of the lump, that came back inconclusinve , he then sent me for a PET scan , he called and said he wanted to remove my tonsils. This in itself is a pain as an adult, when I came out of surgery , my daughter was there and said mom he only removed your right tonsil, but wants to see you in 2 weeks. The recovery from the surgery wasn't bad, painful to eat and swallow for a bit but yes I'd say it was a good 10 days to feeling better and not taking any pain meds. When I went to see him on my follow up thats when he told me I had cancer, not a smoker or a drinker , and that he had already set me up for a oncology visit. I see the oncologist and she is talking talking, and I ahve no clue what she is even saying, almost like she was speaking in a foreign language. She did tell me I was going to have the mother of all treatments, I had chemo every 21 days for 3 months, taxatore, cisplatin, and then a 5FU pump from monday thru friday.Afeter the first chemo the lump at my neck was gone, there was never any discussion of a neck disection. At the end of chemo I then went to  radiation everyday for 7 1/2 weeks, with 1 infusion of carboplatin for every week of radiation. Fortunately I was very luck that I didn't become sick from the tratemets, I lost my hair, lost my taste, but was also proactive , I asked questions , wrote lists , had someone go to each treatment and doctors visit with me in the event there was something I forgot. Is the treatment hard yes, is it doable yes, it is always easy no, there are others who struggled thru treatments, there are potential side effects long after treatments end. It took a good 6 months or a bit longer for my taste to come back, there are still some things that I ate prior to treatment s that still leave a funny taste in my mouth, I have a small bit of neuropothy in one of the toes on my right foot, managed witmeds. At the end of December it will be 3 years out of treatment and cancer free, all scans since then ahve been clean, I still go every 6 months to see my ENT and oncologist for follow-up tests and check ups. In the end I was lucky, but I still believe that when my ENT saw the tonsil he knew what it was but wanted to cover all the bases, ultimately we put our lives in the. hands of all these folks.

    Good luck on your kourney, this is a great site to ask questions, someone will always know what your going thru, your not alone , we are all warriors  in this battle with the beast.

    Blessings and light

     

    Linda.

     

     

    Linda,
     
    Thanks so much for

    Linda,

     

    Thanks so much for taking time to respond.  I'm glad to hear your 3 years out and cancer free....that's awesome.  Sorry you had to go through all the treatments...it doesn't sound like fun.  I am hoping at this point that the cancer is just in my tonsil and surgery will be all that's needed.  My ENT thinks we caught it early enough that it hasn't spread.  I guess I'll find out after the surgery.  I meet with the doctor on Nov 25 to discuss options and set dates for everything....seems like an eternity, but that's as soon as my wife and I both were available.  I want to make sure she is included in all the meetings to catch things that I might miss.  I can tell you this week has been a blur since finding out, but I am going to stay possitive and learn all I can between now and then.

    Thanks again.

     

     

  • osmotar
    osmotar Member Posts: 1,006
    gdawg55 said:

    Linda,
     
    Thanks so much for

    Linda,

     

    Thanks so much for taking time to respond.  I'm glad to hear your 3 years out and cancer free....that's awesome.  Sorry you had to go through all the treatments...it doesn't sound like fun.  I am hoping at this point that the cancer is just in my tonsil and surgery will be all that's needed.  My ENT thinks we caught it early enough that it hasn't spread.  I guess I'll find out after the surgery.  I meet with the doctor on Nov 25 to discuss options and set dates for everything....seems like an eternity, but that's as soon as my wife and I both were available.  I want to make sure she is included in all the meetings to catch things that I might miss.  I can tell you this week has been a blur since finding out, but I am going to stay possitive and learn all I can between now and then.

    Thanks again.

     

     

    Stay Positive

    My oncologist always ( and still does) commented on my attitude, how good it was and that I took everything in stride, I would laugh and say what choice did I have...understand the blurr part, I was dumb founded when I got my diagnosis, first one in my family all the way back to my G-G Grandparents, on both side.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    Greg,

    Welcome to the H&N forum, sorry you find yourself here.

    If surgery only then 10 days off is most likely enough.

    If rads & chemo, more than 10 days (many more)

    Try a 2nd opinion?

    Good luck,

    Matt

  • gdawg55
    gdawg55 Member Posts: 40
    CivilMatt said:

    welcome

    Greg,

    Welcome to the H&N forum, sorry you find yourself here.

    If surgery only then 10 days off is most likely enough.

    If rads & chemo, more than 10 days (many more)

    Try a 2nd opinion?

    Good luck,

    Matt

    Thank you, Matt.
    I'm hoping

    Thank you, Matt.

    I'm hoping only for the surgery at this point, but I guess I won't really know about the additional treatments until they find out if I have any cancer in my lymph nodes.  CT scan looked clear in the neck region so my fingers are crossed that it's only in the tonsil at this point.

    Sounds like the 10 days for recovery from tonsillectomy and neck dissection is on par.

    I most likely will talk to someone else for a 2nd opinion once I've had my meeting with the ENT on the 25th to hear everything he has to stay.  His medical group is part of our best hospital system where I live that has the best cancer treatment facilities, so I believe I'm in good hands, but it won't hurt to get some additional advice I guess.

    Thank you.

    Greg

  • ljoy
    ljoy Member Posts: 94
    tonsil cancer

    I'm a nine year survivor. Like a lot of others on this site found it with a small  lump under my right jaw bone while shaving. Had the lump removed in out patient surgery. Came back positive for squamous cell cancer. Found the primary in my right tonsil. Had my tonsils out and then 39 radiation treatments and three rounds of Cisplatin and one week of 5FU. The tonsil surgery was not bad at all. And, I had a generous tonsilectomy according to my surgeon at M.D. Anderson Cancer Center in Houston, TX. that was to be sure the margins were clear of cancer.

    I don't know where you are but a lot of cancer treatmnet centers are not doing neck disections. They feel the radiation and chemo are sufficent. As all ready mentioned you may want to seek a second opinion before beginning treatment. I went to M. D. Anderson for a second opionon which was well worth the time and effort.

    I hope this gives you a little more insight as you begin your journey.

    My very best to you and your family.

  • petroglyph
    petroglyph Member Posts: 41
    alternative

    I know what you age going through. I'm coming up on a year from my first throat doc, being suspicious of swollen lymph glands zone 5, right side, enlarged base of tongue, and decades of smoking.

    I had seen him nearly a year earlier for the same sore throat that wouldn't go away, tried believing it was an allergy. The first ent guy was qualified probably but got trainiing in the Navy, he was just too brash, zero personality [which I can work around], but one thing I won't accept from any dr. is condescending. I resent some of their God complexes. After my wife got out of his face, I would never be able to feel safe while under sedation, and him with a scalpel in me somewheres.

    Second ent, a partner in the same building but not quite the **** the first guy was. Big hands, yikes. I still see him for my follow ups. The first guy took quite a few biopsy's of my tongue and throat, and somehow during surgery [and this is common], I either fought the activity or something but when I awoke, I was missing three dime sized chunks from the inside of my jaw near my teeth. The skin there is so thin with minimal blood flow, it took forever to heal. In my emotional state it was easy to heap the blame on the first ent, he did the cutting. So, so far I have his "suspicion", and nothing comes back positive so I do a ct and a pet and xray and whatever. No particular order of those procedures. I'm trying to get to my point. So far, the only thing they got is a hot zone from the pet scan at the base of tongue, everything else looks good. Their opinion is more biopsies. I enquired about the reasoning and their explanation was if someone had ever smoked they would not stop looking until they found cancer or were absolutely positive without a doubt sure there was no cancer. They were prepared to go to any lengths, imo even if it killed the patient [me], I am not prepared to go as far as they are. After the second set of biopsies, whew, throat, tonsils, base of tongue and new chunks from my jaw they were amazed that nothing had come back positive, they were befuddled. Next step was the fna, or fine needle biopsy. I had two swollen lymph glands 2.3. and 4.3 cms, got a biopsy in the office and waited for results. The waiting my friend, as you know is life altering.

    Results came back positive for H&N squamos cell carcinoma. Until this time anything I knew about cancer would easily fit on one page. No one that doesn't have it or a loved one or in the med field does know anything about it. Fear has kept it at arms length. Shoot, maybe I can get to the point.

    We agreed on a second opinion, now we are getting somewhere. He got me cuts in line at the Mayo Clinic in Phoenix. The building alone will put you at ease because you realize right away that you have reached the state of the art that is alopathic medicine in our time. The facility's are beautiful as is the story of how the Mayo came to be. It is what medicine should look like in this country. I found out the Mayo is non-profit, hunh? yep.

    I met the best surgeon in the southwest for this sort of thing, he personally took a fna and walked it to pathology and walked back with the results in less than 45 minutes. Positve, head and neck, with unknown primary. 

    Ok, Ok, before this turns into a novel. This is my best advice. Get the absolutely best qualified second opinion withing a thousand miles. Next, and this one has helped me the most. Cancer is a hidious disease for certain, but an importan fact that I had to discover myself [because no one wants to know] is that although deadly, it is slow. At least my kind is. The drs if I didn't take charge of my own health [which you will need to do] would have had me through their mill months ago and on to many new patients. You have time [again, with THIS cancer]. I am told that usully by the time you are diagnosed you have already had it for maybe years. You have, had it, we all have it, for years. What would kill me the fastest was the anxiety and fear, not the disease.

    Anyone notice what a big rush they are in to get you signed up for expensive procedures but once you are in the system, time sloooooooows down? They made the mistake of giving me time to breathe. As overwhelmed as you are [me too], you have to take charge of yourself in order to get the best possible results. This is no slam on anyone in your support group, it is just a fact. And you will have to make decisions that do effect your life going forward. But you have time, you do. Regardless of how this thing goes for you, there are things you can do to help yourself.

    I joined the local cancer survivors group. There is nothing like the support of others that have been through what you are going through. Hence why all of us are on this forum. It is funny[ in the best sense of the word] these guys, I go to the mens group. They consider me the young blood [59] and the have hopes I will be able to help take the group forward in the future. The oldest guy is I think 91? The others are 70+, I tell them it ain't the years boys, its the miles. We all chuckle. But there are so many questions, these guys can tell me their experience with local drs., bring in speakers, hospice etc. A verirable font of information.

    You need to be as healthy as you can, especially going into surgery. My fear, stress etc. had cause me to lose about 35 pounds in about 4 months and unfortunately when you lose weight like that it is never the weight you want to lose. That loss is your muscle and protein. Me personally I believe in supplements, each to their own.

    Now I'm 7 months post surgery from a major neck resection with tonsil and lymph removal. They never found a tumor. There are things that none of us learns until "after" the procedures. I'm truly glad that members here have survived the procedures cut, burn and poison and I sincerely apolgize if those terms create any hardship on anyone. But that is the ama approach to cancer as it now stands with "cures" in the wind involving immunotherapy. Long story coming to a close. Learn to breathe, learn to be at peace, stress will not help you recover faster. 

    You can beat this, h&n is very survivable. I know I lost 15 lymph nodes that were perfectly healthy. I know they changed their story a few times. I know they are experimenting. They told me if I chose the surgery, I would wake up without cancer, and if there they would find it. They removed two necrotic lymph nodes and everything else was "just to be sure". Everyone has said "how good I look". Well thanks, I guess. I do look better now that I have gained back twenty pounds. I know how a sharpei dog feels.

    I am rambling,,,,,be your own best advocate,,,,,there is NO ONE else who has that power. God bless

  • gdawg55
    gdawg55 Member Posts: 40

    alternative

    I know what you age going through. I'm coming up on a year from my first throat doc, being suspicious of swollen lymph glands zone 5, right side, enlarged base of tongue, and decades of smoking.

    I had seen him nearly a year earlier for the same sore throat that wouldn't go away, tried believing it was an allergy. The first ent guy was qualified probably but got trainiing in the Navy, he was just too brash, zero personality [which I can work around], but one thing I won't accept from any dr. is condescending. I resent some of their God complexes. After my wife got out of his face, I would never be able to feel safe while under sedation, and him with a scalpel in me somewheres.

    Second ent, a partner in the same building but not quite the **** the first guy was. Big hands, yikes. I still see him for my follow ups. The first guy took quite a few biopsy's of my tongue and throat, and somehow during surgery [and this is common], I either fought the activity or something but when I awoke, I was missing three dime sized chunks from the inside of my jaw near my teeth. The skin there is so thin with minimal blood flow, it took forever to heal. In my emotional state it was easy to heap the blame on the first ent, he did the cutting. So, so far I have his "suspicion", and nothing comes back positive so I do a ct and a pet and xray and whatever. No particular order of those procedures. I'm trying to get to my point. So far, the only thing they got is a hot zone from the pet scan at the base of tongue, everything else looks good. Their opinion is more biopsies. I enquired about the reasoning and their explanation was if someone had ever smoked they would not stop looking until they found cancer or were absolutely positive without a doubt sure there was no cancer. They were prepared to go to any lengths, imo even if it killed the patient [me], I am not prepared to go as far as they are. After the second set of biopsies, whew, throat, tonsils, base of tongue and new chunks from my jaw they were amazed that nothing had come back positive, they were befuddled. Next step was the fna, or fine needle biopsy. I had two swollen lymph glands 2.3. and 4.3 cms, got a biopsy in the office and waited for results. The waiting my friend, as you know is life altering.

    Results came back positive for H&N squamos cell carcinoma. Until this time anything I knew about cancer would easily fit on one page. No one that doesn't have it or a loved one or in the med field does know anything about it. Fear has kept it at arms length. Shoot, maybe I can get to the point.

    We agreed on a second opinion, now we are getting somewhere. He got me cuts in line at the Mayo Clinic in Phoenix. The building alone will put you at ease because you realize right away that you have reached the state of the art that is alopathic medicine in our time. The facility's are beautiful as is the story of how the Mayo came to be. It is what medicine should look like in this country. I found out the Mayo is non-profit, hunh? yep.

    I met the best surgeon in the southwest for this sort of thing, he personally took a fna and walked it to pathology and walked back with the results in less than 45 minutes. Positve, head and neck, with unknown primary. 

    Ok, Ok, before this turns into a novel. This is my best advice. Get the absolutely best qualified second opinion withing a thousand miles. Next, and this one has helped me the most. Cancer is a hidious disease for certain, but an importan fact that I had to discover myself [because no one wants to know] is that although deadly, it is slow. At least my kind is. The drs if I didn't take charge of my own health [which you will need to do] would have had me through their mill months ago and on to many new patients. You have time [again, with THIS cancer]. I am told that usully by the time you are diagnosed you have already had it for maybe years. You have, had it, we all have it, for years. What would kill me the fastest was the anxiety and fear, not the disease.

    Anyone notice what a big rush they are in to get you signed up for expensive procedures but once you are in the system, time sloooooooows down? They made the mistake of giving me time to breathe. As overwhelmed as you are [me too], you have to take charge of yourself in order to get the best possible results. This is no slam on anyone in your support group, it is just a fact. And you will have to make decisions that do effect your life going forward. But you have time, you do. Regardless of how this thing goes for you, there are things you can do to help yourself.

    I joined the local cancer survivors group. There is nothing like the support of others that have been through what you are going through. Hence why all of us are on this forum. It is funny[ in the best sense of the word] these guys, I go to the mens group. They consider me the young blood [59] and the have hopes I will be able to help take the group forward in the future. The oldest guy is I think 91? The others are 70+, I tell them it ain't the years boys, its the miles. We all chuckle. But there are so many questions, these guys can tell me their experience with local drs., bring in speakers, hospice etc. A verirable font of information.

    You need to be as healthy as you can, especially going into surgery. My fear, stress etc. had cause me to lose about 35 pounds in about 4 months and unfortunately when you lose weight like that it is never the weight you want to lose. That loss is your muscle and protein. Me personally I believe in supplements, each to their own.

    Now I'm 7 months post surgery from a major neck resection with tonsil and lymph removal. They never found a tumor. There are things that none of us learns until "after" the procedures. I'm truly glad that members here have survived the procedures cut, burn and poison and I sincerely apolgize if those terms create any hardship on anyone. But that is the ama approach to cancer as it now stands with "cures" in the wind involving immunotherapy. Long story coming to a close. Learn to breathe, learn to be at peace, stress will not help you recover faster. 

    You can beat this, h&n is very survivable. I know I lost 15 lymph nodes that were perfectly healthy. I know they changed their story a few times. I know they are experimenting. They told me if I chose the surgery, I would wake up without cancer, and if there they would find it. They removed two necrotic lymph nodes and everything else was "just to be sure". Everyone has said "how good I look". Well thanks, I guess. I do look better now that I have gained back twenty pounds. I know how a sharpei dog feels.

    I am rambling,,,,,be your own best advocate,,,,,there is NO ONE else who has that power. God bless

    Thank you ljoy and

    Thank you ljoy and petroglyph, I really appreciate you both taking time to respond.  I am in that waiting stage now as I don't see my dr until Nov 25 to go over details.  My wife is traveling with work and I want her to be there for the meeting so we both hear the same things...otherwise I wouldn't want to wait so long.  Petroglyph, sounds like you've been through the ringer.  I wish you the best and hope you have a speedy recovery.

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Welcome to the H&N, and sorry you need to be here. I agree with the surgery and neck dissection and no RAD or chemo unless needed after. You will do so much better that way. I was T3;N0;M0; SCC of the larynx, and had surgery and neck dissection on both sides 2-5. If you are going to a "Local" Dr and not a major cancer hospital, I would recomend a second opion. You want to have this done by the best and someone that does lots of them. I wanted someone that ranked high in cancer and Head and neck both. I'm in California so the best on the west coast in both is Stanford. It was well worth it.

    http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

     

    Bill OCT 2013

  • gdawg55
    gdawg55 Member Posts: 40
    wmc said:

    Welcome to the H&N Group

    Welcome to the H&N, and sorry you need to be here. I agree with the surgery and neck dissection and no RAD or chemo unless needed after. You will do so much better that way. I was T3;N0;M0; SCC of the larynx, and had surgery and neck dissection on both sides 2-5. If you are going to a "Local" Dr and not a major cancer hospital, I would recomend a second opion. You want to have this done by the best and someone that does lots of them. I wanted someone that ranked high in cancer and Head and neck both. I'm in California so the best on the west coast in both is Stanford. It was well worth it.

    http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

     

    Bill OCT 2013

    Thank you Bill.  I appreciate

    Thank you Bill.  I appreciate the link and advice.  I am keeping my fingers crossed that surgery and neck dissection will be all that's required.  I will most definitely reach out for a second opinion after I've had my discussion with my ENT on Nov 25.  I believe something like this is important enough to seek other opinions.  I"m in South Carolina so no major cancer centers around here.  I think MUSC in Charleston maybe the closest in my state, or maybe Emory in Atlanta out of state.

    Thanks again.

  • Goyca
    Goyca Member Posts: 220
    Greg, wish u the best during

    Greg, wish u the best during this phase.

    I hope u wont need treatments and surgery will be enough.

    stay strong. Prayers sent ur way.

    Goyca

  • gdawg55
    gdawg55 Member Posts: 40
    Goyca said:

    Greg, wish u the best during

    Greg, wish u the best during this phase.

    I hope u wont need treatments and surgery will be enough.

    stay strong. Prayers sent ur way.

    Goyca

    Many thanks, Goyca.

    Many thanks, Goyca.

  • wmc
    wmc Member Posts: 1,804
    gdawg55 said:

    Thank you Bill.  I appreciate

    Thank you Bill.  I appreciate the link and advice.  I am keeping my fingers crossed that surgery and neck dissection will be all that's required.  I will most definitely reach out for a second opinion after I've had my discussion with my ENT on Nov 25.  I believe something like this is important enough to seek other opinions.  I"m in South Carolina so no major cancer centers around here.  I think MUSC in Charleston maybe the closest in my state, or maybe Emory in Atlanta out of state.

    Thanks again.

    Would you belive

    They did a neck dissection on both sides and a full laryngectomy, but I still have my tonsils. Go figure, I thought as long as you are there why not take them too.

  • petroglyph
    petroglyph Member Posts: 41
    gdawg55 said:

    Thank you Bill.  I appreciate

    Thank you Bill.  I appreciate the link and advice.  I am keeping my fingers crossed that surgery and neck dissection will be all that's required.  I will most definitely reach out for a second opinion after I've had my discussion with my ENT on Nov 25.  I believe something like this is important enough to seek other opinions.  I"m in South Carolina so no major cancer centers around here.  I think MUSC in Charleston maybe the closest in my state, or maybe Emory in Atlanta out of state.

    Thanks again.

    I don't wish to make this any

    I don't wish to make this any harder than it is, however I want to say.

    These decisions were/are extremely difficult to make. Fear and the unknown had neat total control of my life and anxst/trauma seemed headed towards me at unfathomable speed, and to top it off I knew nothing of cancer. 

    Whatever you know about it, I can near guarantee you wish you had a better understanding [as do I]. You are going for another opinion, good. I hope you get one from a different "camp" and compare.

    I liken what many do to an analogy of "turning over the keys" to the dr. and just having faith "and hoping for the best". Believe me my prayers go out to us all "in my very own way". Others may try to make this more comfortable, I want to make you make your own choices. My question is on the neck resection. We all need to make eye contact with the person who is going to be doing the cutting and both understand what the terms mean. And, what happens afterwards.

    I thought I would mostly be losing two lymph nodes that were necrotic, as it turns out they removed 15 more that were clean "just in case". I really think that was overkill, as each was removed they were tested for cancer and one after another was clean. So now, there aren't any lymph nodes there to do the job that lymph nodes are supposed to do. There are ramifications to that.

    Each to their own, but I am taking alternative I.V. treatments for aftercare versus rad and chemo. Five drs and I have had words. I posted before they never found a tumor, so I have unknown primary. I am not willing to undergo radiation because "statistically" they think I should. So far, one dr, has apologized, kudos to him. But as I explained to him, that doesn't make me smart, or have some secret powers, I just got lucky. At this point I am glad I chose the path I did.

    I haven't spent much time here at this site and dont' want to create any bad feelings and not sure how much truth [as I see it] I'm supposed to post.

    If your lymphs are clear according to a pet, I don't think they should be removed "just to be sure". My opinion is this disease is slow. If the lymph's start to swell up and become necrotic and they are fna tested positve for cancer, they can then remove them. They are there for a reason. No one explained lymphadema to me and the very real possibility of that happening. There are the possibility of any number of side effects to these treatments.

    As always in any case, be as healthy going in as you can possbibly be. Hydrate properly, good nutrition, no sugar, and exercise. Get well, live long enough to be a problem for our grandkids.

  • gdawg55
    gdawg55 Member Posts: 40

    I don't wish to make this any

    I don't wish to make this any harder than it is, however I want to say.

    These decisions were/are extremely difficult to make. Fear and the unknown had neat total control of my life and anxst/trauma seemed headed towards me at unfathomable speed, and to top it off I knew nothing of cancer. 

    Whatever you know about it, I can near guarantee you wish you had a better understanding [as do I]. You are going for another opinion, good. I hope you get one from a different "camp" and compare.

    I liken what many do to an analogy of "turning over the keys" to the dr. and just having faith "and hoping for the best". Believe me my prayers go out to us all "in my very own way". Others may try to make this more comfortable, I want to make you make your own choices. My question is on the neck resection. We all need to make eye contact with the person who is going to be doing the cutting and both understand what the terms mean. And, what happens afterwards.

    I thought I would mostly be losing two lymph nodes that were necrotic, as it turns out they removed 15 more that were clean "just in case". I really think that was overkill, as each was removed they were tested for cancer and one after another was clean. So now, there aren't any lymph nodes there to do the job that lymph nodes are supposed to do. There are ramifications to that.

    Each to their own, but I am taking alternative I.V. treatments for aftercare versus rad and chemo. Five drs and I have had words. I posted before they never found a tumor, so I have unknown primary. I am not willing to undergo radiation because "statistically" they think I should. So far, one dr, has apologized, kudos to him. But as I explained to him, that doesn't make me smart, or have some secret powers, I just got lucky. At this point I am glad I chose the path I did.

    I haven't spent much time here at this site and dont' want to create any bad feelings and not sure how much truth [as I see it] I'm supposed to post.

    If your lymphs are clear according to a pet, I don't think they should be removed "just to be sure". My opinion is this disease is slow. If the lymph's start to swell up and become necrotic and they are fna tested positve for cancer, they can then remove them. They are there for a reason. No one explained lymphadema to me and the very real possibility of that happening. There are the possibility of any number of side effects to these treatments.

    As always in any case, be as healthy going in as you can possbibly be. Hydrate properly, good nutrition, no sugar, and exercise. Get well, live long enough to be a problem for our grandkids.

    Thanks, petroglyph.  You have

    Thanks, petroglyph.  You have given me some things to think about for sure.  The doctor wanted me to have a PET scan but my insurance wouldn't pay for it.  The only thing covered was a CT scan (which I had) and it came back clean in the neck, but doctor says sometimes CT scans don't show everything.  I think alot more will become clear after I sit down with the doctor and discuss a plan of attack.  After that, I will seek out another opinion....maybe a nice extended weekend in Charleston with a quick visit to MUSC.  I could use a get away...

    Thank you.

  • petroglyph
    petroglyph Member Posts: 41
    gdawg55 said:

    Thanks, petroglyph.  You have

    Thanks, petroglyph.  You have given me some things to think about for sure.  The doctor wanted me to have a PET scan but my insurance wouldn't pay for it.  The only thing covered was a CT scan (which I had) and it came back clean in the neck, but doctor says sometimes CT scans don't show everything.  I think alot more will become clear after I sit down with the doctor and discuss a plan of attack.  After that, I will seek out another opinion....maybe a nice extended weekend in Charleston with a quick visit to MUSC.  I could use a get away...

    Thank you.

    It "makes" my day if I can

    It "makes" my day if I can help anyone, it's just my philosophy and,,you are very welcome.

    The value of exchanging thoughts with someone who has went before us is without equal. I encourage others to find their local cancer support group and attend a few meetings. I came out of pharmacy the other day and I recognized and elder lady who had a balloon arm which I had noticed inside. Outside she made a comment to me that she wished she hadn't lost her prescription, I tried to suggest some help for her. I then asked her if she had "lymphadema" in her arm and she was very suprised that I knew and told me she had had breast cancer 20 years ago and had to take anti biotics on a regular basis to fight the swelling?

    Anyway, I asked if she went to a cancer support group and she replied no, no she hadn't and that she was cured and didn't need the help. When I pointed out to her that it wasn't about her and that the people showing up for their first time, literally in shock and seeing a 20 year survivor that they could speak with could help them immeasurably. She thought for about 2 seconds and realized it might be the single most important thing that she could do with her time, is share it, with someone who really needs it. She smiled and said she would head down to the center and find out when to attend. That was super cool.

    I'm fairly new to the tiny group of survivors, they think I'm the "youngblood" at 59 and they are hoping I will help carry the message forward? IMO. OK, here goes my schpeel, it takes so little time really and so little effort to swing by a meeting once in a while. When you get to the other side my friend, consider passing along your knowledge. We beat cancer not by making the disease go away, we beat it by extending the life and improving the quality of that life of cancer victims. Success according to the AMA often is measured in months. Winning for me, well I would have to say would be measured in acceptance and distance from fear. I think we all get some time to do some serious consideration. 

    When I was definately diagnosed positive, my life changed right then, right there. In a way it was relieving. Pretense loses value, what is, what really is important, becomes clearer. Hard for someone else to understand, when I didn't know, that acutally finding a tumor, that could be attacked would have been a bit of a relief at that time. Now, later, I'm glad we didn't find one, but it only means in my case that I have unknown primary, it does not mean I am cancer free, only that they don't know where it's coming from.

    Dang, I do drag on dont' I. Here is the point I wanted to get to. You had a CT scan. My understanding is that the only difference between a CT [with contrast] and a PET scan is the type of dye used. The CT is iodine I believe and the PET is nuclear. This is where a sufferer could use a knowledgable advocate that can and will step in, in our behalf. Call the Cancer institute in your area and see if maybe they will call your insurance company and ream them a new a**. If your ent prescribed a PET scan then you deserve one and that is what you/we all need, period.

    You need the diagnostic evidence of what and where all you are dealing with. This unknown is a large part of the angst we have to deal with. The ent prescribed it, get it **** them! imo

    Knowlege is power my friend. A CT will show a mass, a PET will indicate whether or not it is cancer and where and how much or little you are dealing with. It will tell you whether or not the cancer has metastsized [spread]. At this point I personally question why I ever had/have chest xrays, to me they are nearly worthless. imo They will show "maybe" a broken bone, but I think I get as good of results using the fish finder on my [x]boat.

    The PET I had was around 7k, my insurance paid, thank God. I have found other places to spend my money though. All my alternative treatments and vast vitamin regimen are out of pocket. My reasoning for spending the money which I hate doing is, if I don't survive this crap then I won't need the money. If I come out healthy [which seems to be happening] then I can make it back? I am going to take as much money with me to the afterlife as Howard Hughes did, nada.

    It is a life altering event. Head and Neck cancer is very survivable, that isn't much comfort but it is a fact. I believe it is at least partially up to us to affect the outcome of our diagnosis.

    Get well and lets beat this into the next century.

    And IMO, whatever you are doing get any sugar you can out of your diet. That is what cancer eats is sugar, start right now starving it out of your body. Single processed sugar like good fruit is better than two step processed sugar like, organic brown or dried cane sugar, and worst of all is that triple processed white sugar. That is poison as sure as smoking is bad. I can't believe it is recommended as a food source by the ama. Thats another story.

  • Ron Silver
    Ron Silver Member Posts: 94

    It "makes" my day if I can

    It "makes" my day if I can help anyone, it's just my philosophy and,,you are very welcome.

    The value of exchanging thoughts with someone who has went before us is without equal. I encourage others to find their local cancer support group and attend a few meetings. I came out of pharmacy the other day and I recognized and elder lady who had a balloon arm which I had noticed inside. Outside she made a comment to me that she wished she hadn't lost her prescription, I tried to suggest some help for her. I then asked her if she had "lymphadema" in her arm and she was very suprised that I knew and told me she had had breast cancer 20 years ago and had to take anti biotics on a regular basis to fight the swelling?

    Anyway, I asked if she went to a cancer support group and she replied no, no she hadn't and that she was cured and didn't need the help. When I pointed out to her that it wasn't about her and that the people showing up for their first time, literally in shock and seeing a 20 year survivor that they could speak with could help them immeasurably. She thought for about 2 seconds and realized it might be the single most important thing that she could do with her time, is share it, with someone who really needs it. She smiled and said she would head down to the center and find out when to attend. That was super cool.

    I'm fairly new to the tiny group of survivors, they think I'm the "youngblood" at 59 and they are hoping I will help carry the message forward? IMO. OK, here goes my schpeel, it takes so little time really and so little effort to swing by a meeting once in a while. When you get to the other side my friend, consider passing along your knowledge. We beat cancer not by making the disease go away, we beat it by extending the life and improving the quality of that life of cancer victims. Success according to the AMA often is measured in months. Winning for me, well I would have to say would be measured in acceptance and distance from fear. I think we all get some time to do some serious consideration. 

    When I was definately diagnosed positive, my life changed right then, right there. In a way it was relieving. Pretense loses value, what is, what really is important, becomes clearer. Hard for someone else to understand, when I didn't know, that acutally finding a tumor, that could be attacked would have been a bit of a relief at that time. Now, later, I'm glad we didn't find one, but it only means in my case that I have unknown primary, it does not mean I am cancer free, only that they don't know where it's coming from.

    Dang, I do drag on dont' I. Here is the point I wanted to get to. You had a CT scan. My understanding is that the only difference between a CT [with contrast] and a PET scan is the type of dye used. The CT is iodine I believe and the PET is nuclear. This is where a sufferer could use a knowledgable advocate that can and will step in, in our behalf. Call the Cancer institute in your area and see if maybe they will call your insurance company and ream them a new a**. If your ent prescribed a PET scan then you deserve one and that is what you/we all need, period.

    You need the diagnostic evidence of what and where all you are dealing with. This unknown is a large part of the angst we have to deal with. The ent prescribed it, get it **** them! imo

    Knowlege is power my friend. A CT will show a mass, a PET will indicate whether or not it is cancer and where and how much or little you are dealing with. It will tell you whether or not the cancer has metastsized [spread]. At this point I personally question why I ever had/have chest xrays, to me they are nearly worthless. imo They will show "maybe" a broken bone, but I think I get as good of results using the fish finder on my [x]boat.

    The PET I had was around 7k, my insurance paid, thank God. I have found other places to spend my money though. All my alternative treatments and vast vitamin regimen are out of pocket. My reasoning for spending the money which I hate doing is, if I don't survive this crap then I won't need the money. If I come out healthy [which seems to be happening] then I can make it back? I am going to take as much money with me to the afterlife as Howard Hughes did, nada.

    It is a life altering event. Head and Neck cancer is very survivable, that isn't much comfort but it is a fact. I believe it is at least partially up to us to affect the outcome of our diagnosis.

    Get well and lets beat this into the next century.

    And IMO, whatever you are doing get any sugar you can out of your diet. That is what cancer eats is sugar, start right now starving it out of your body. Single processed sugar like good fruit is better than two step processed sugar like, organic brown or dried cane sugar, and worst of all is that triple processed white sugar. That is poison as sure as smoking is bad. I can't believe it is recommended as a food source by the ama. Thats another story.

    "And IMO, whatever you are

    "And IMO, whatever you are doing get any sugar you can out of your diet. That is what cancer eats is sugar, start right now starving it out of your body. Single processed sugar like good fruit is better than two step processed sugar like, organic brown or dried cane sugar, and worst of all is that triple processed white sugar. That is poison as sure as smoking is bad. I can't believe it is recommended as a food source by the ama. Thats another story."

     Nonsense.

    http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714?pg=2

    Myth: People with cancer shouldn't eat sugar, since it can cause cancer to grow faster.

     

    Fact: Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.

    This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.

     http://www.cancercenter.com/discussions/blog/does-sugar-feed-cancer/

    Does sugar 'feed' cancer?

     


    CTCA 
    July 02, 2013



         



    misperception with sugar makes cancer grow

    Websites promoting the idea that sugar “feeds” cancer suggest that eating foods with sugar makes cancer grow faster. As a result, some cancer patients forego eating any sugar, eliminating beneficial foods, such as fruits, that contain essential nutrients.

    There is no conclusive research on human subjects to prove that sugar makes cancerous cells grow and metastasize. Avoiding foods with processed sugar is a good idea in general, but eliminating foods with natural sugar won’t stop cancer cells from dividing.

     

     
  • petroglyph
    petroglyph Member Posts: 41

    "And IMO, whatever you are

    "And IMO, whatever you are doing get any sugar you can out of your diet. That is what cancer eats is sugar, start right now starving it out of your body. Single processed sugar like good fruit is better than two step processed sugar like, organic brown or dried cane sugar, and worst of all is that triple processed white sugar. That is poison as sure as smoking is bad. I can't believe it is recommended as a food source by the ama. Thats another story."

     Nonsense.

    http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714?pg=2

    Myth: People with cancer shouldn't eat sugar, since it can cause cancer to grow faster.

     

    Fact: Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.

    This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.

     http://www.cancercenter.com/discussions/blog/does-sugar-feed-cancer/

    Does sugar 'feed' cancer?

     


    CTCA 
    July 02, 2013



         



    misperception with sugar makes cancer grow

    Websites promoting the idea that sugar “feeds” cancer suggest that eating foods with sugar makes cancer grow faster. As a result, some cancer patients forego eating any sugar, eliminating beneficial foods, such as fruits, that contain essential nutrients.

    There is no conclusive research on human subjects to prove that sugar makes cancerous cells grow and metastasize. Avoiding foods with processed sugar is a good idea in general, but eliminating foods with natural sugar won’t stop cancer cells from dividing.

     

     
    I'm not going to get into

    I'm not going to get into some argument with you. Your use of large lettering indicates shouting or anger. Multiple times I have used IMO, or in my opinion, it seems that you take issue with my endeavor to help someone. 

    So, I read your first link from the Mayo. IMO, the finest alopathic medical establishment I have ever witnessed, the parking grounds alone [at least in Phoenix] stirs immediately confidence that you have arrived at a state of the art facility. I hope if I ever need surgery again I can travel there. But this, although if you choose to argue can say is out of context, you have to admit it is in great big letters, not unlike yours. This from the article:

     

    "Myth: Microwaving plastic containers and wraps releases harmful, cancer-causing substances into food."  If you continue to read far enough you will see that they only recommend micro wave plastics, but it takes reading further. You think micro waving food doesn't kill the healthy ingredients in food? Really? You can kill any bacteria in a micro wave, healthy or unhealthy. If you wanted to help the op, you could offer some "other advice" rather than single out specific phrases to try and undermine my attempt to help. 

    Now this from the paragraph that you quoted of mine: [Single processed sugar like good fruit is better than two step processed sugar] like, organic brown or dried cane sugar, and worst of all is that triple processed white sugar. That is poison as sure as smoking is bad. I can't believe it is recommended as a food source by the ama.

    Read that again. I don't believe you have a comprehension problem, however it seems you do have some other interest here. Are you recommending cancer patients eat sugar, especially white sugar? I don't have a medical background, maybe you do? 

    Ok, this from your second link: [There is no conclusive research on human subjects to prove that sugar makes cancerous cells grow and metastasize. Avoiding foods with processed sugar is a good idea in general,] but eliminating foods with natural sugar won’t stop cancer cells from dividing.

    I'm not going to spend a great deal of time attempting to prove or disprove this article bit by bit, but this says "no conclusive evidence that sugar makes cancerous cells grow" as in NOT CONCLUSIVE, but they didn't say no evidence. There apparently according to the article you linked is not proof one way or the other whether or not cancer eats sugar. You use a PET scan as evidence of why people may mis understand what cancer feeds on.

    Maybe you could better explain why lay persons such as myself mis understand why before a PET scan patients are "temporarily starved" from sugar and then the radioactive material is added to a material the cells want [in this case glucose ] and the cancer cells "eat" first and glow. Pardon my symantics. 

     

  • Ron Silver
    Ron Silver Member Posts: 94

    I'm not going to get into

    I'm not going to get into some argument with you. Your use of large lettering indicates shouting or anger. Multiple times I have used IMO, or in my opinion, it seems that you take issue with my endeavor to help someone. 

    So, I read your first link from the Mayo. IMO, the finest alopathic medical establishment I have ever witnessed, the parking grounds alone [at least in Phoenix] stirs immediately confidence that you have arrived at a state of the art facility. I hope if I ever need surgery again I can travel there. But this, although if you choose to argue can say is out of context, you have to admit it is in great big letters, not unlike yours. This from the article:

     

    "Myth: Microwaving plastic containers and wraps releases harmful, cancer-causing substances into food."  If you continue to read far enough you will see that they only recommend micro wave plastics, but it takes reading further. You think micro waving food doesn't kill the healthy ingredients in food? Really? You can kill any bacteria in a micro wave, healthy or unhealthy. If you wanted to help the op, you could offer some "other advice" rather than single out specific phrases to try and undermine my attempt to help. 

    Now this from the paragraph that you quoted of mine: [Single processed sugar like good fruit is better than two step processed sugar] like, organic brown or dried cane sugar, and worst of all is that triple processed white sugar. That is poison as sure as smoking is bad. I can't believe it is recommended as a food source by the ama.

    Read that again. I don't believe you have a comprehension problem, however it seems you do have some other interest here. Are you recommending cancer patients eat sugar, especially white sugar? I don't have a medical background, maybe you do? 

    Ok, this from your second link: [There is no conclusive research on human subjects to prove that sugar makes cancerous cells grow and metastasize. Avoiding foods with processed sugar is a good idea in general,] but eliminating foods with natural sugar won’t stop cancer cells from dividing.

    I'm not going to spend a great deal of time attempting to prove or disprove this article bit by bit, but this says "no conclusive evidence that sugar makes cancerous cells grow" as in NOT CONCLUSIVE, but they didn't say no evidence. There apparently according to the article you linked is not proof one way or the other whether or not cancer eats sugar. You use a PET scan as evidence of why people may mis understand what cancer feeds on.

    Maybe you could better explain why lay persons such as myself mis understand why before a PET scan patients are "temporarily starved" from sugar and then the radioactive material is added to a material the cells want [in this case glucose ] and the cancer cells "eat" first and glow. Pardon my symantics. 

     

    No anger just copy and paste.

    No anger just copy and paste.  Your assertions are so off base, so far from what OUR doctors recommend, and baseless.  This is a head and neck cancer forum.  Many of us enjoy eating ice cream and other sweet treats.  To compare eating foods with processed sugar with smoking is absurd.  Absurd nonsense.  Spread your absurd nonsense somewhere else.  Cancer is difficult, the treatments are difficult, we don't need nonsense posts like yours.  Good bye.

  • petroglyph
    petroglyph Member Posts: 41

    No anger just copy and paste.

    No anger just copy and paste.  Your assertions are so off base, so far from what OUR doctors recommend, and baseless.  This is a head and neck cancer forum.  Many of us enjoy eating ice cream and other sweet treats.  To compare eating foods with processed sugar with smoking is absurd.  Absurd nonsense.  Spread your absurd nonsense somewhere else.  Cancer is difficult, the treatments are difficult, we don't need nonsense posts like yours.  Good bye.

    I too have been diagnosed

    I too have been diagnosed with head and neck cancer and have undergone a major neck resection. A dozen or so biopsy's. I'm not alive to spread gibberish. I was here trying to support the op, which I haven't seen return. Nor any effort from you attempting to do so other than try to argue with me, which is now over.

    You seem to take issue with my belief on processed sugar. I find that forums are most beneficial when ideas are debated and not when posters are attacked. 

    Are you not aware that obesity has over taken heart disease as the number one killer in this country? I too love the taste of ice cream, sweets etc., but I am not going to be ignorant and think they are harmless.

    At your suggestion, since the op has seem to have left, I will sign out. Now that I have left because it is distateful for me to continue this negative dialogue with you, I hope you will check in and try to help the op with other suggestions other than your opinions on diet.

    Good luck, Ron..I hope you beat this disease

    PS; my doctors have done nothing but complement me on my progress, that includes my surgeon at the Mayo Clinic, my ent, my oncologist, second ent, my pcp, my radiologist and my naturopath, I am not aware of what "your drs have to say", but as you wish, good bye Ron Silver

    Are you aware by chance of the major contributing factors to salivary gland cancer and thyroid cancer is? Those are the things people should know so they can make rational informed decisions, but that is jmho.