Tonsil Cancer

Peter8
Peter8 Member Posts: 2 Member
edited March 2023 in Head and Neck Cancer #1
I have been diagnosed with Tonsil cancer and I was just wondering if there is anybody else out there that is dealing with the same type as I

Comments

  • hipwr1
    hipwr1 Member Posts: 8 Member
    #2
    Welcome to the "survivors"!! I did not have tonsil involvement, but do have base of tongue cancer and had my tonsils and tonsil beds removed during my radical neck dissection surgery. This all has taken place since 4/1 of this year and I finished my radiation and chemo protocol on 6/29, and I am 'clean' according to my last PET scan on 8/3.
    I'm not certain how the medical world handles tonsil cancer, but I have to assume very similar to tongue cancer. Listen to your doctors and medical professionals, they really do know what they are doing. Pick out one of your doctors that you feel most comfortable with, and go with their protocol, and don't look back. The second and third opinion options will drive you nuts, and all you will do is second guess yourself. Find the path, believe the path, and follow it. Try to remain as positive as you can, and don't dwell on yesterday, but concentrate on tomorrow. You will get thru this, as have I, and you will become a better person as a result. Good luck and good fight!!
  • jkinobay
    jkinobay Member Posts: 298 Member
    #3
    As these compassionate CSN friends told me a few months back.........congratulations on being a Cancer Survivor........you will get through this. It may not be your idea of a fun trip but you WILL get through it.

    I could not possibly improve on what hipwr1 said....all excellent advice, much of which I have had to focus on myself in recent days. I can only add that I do have tonsil cancer. The Reader's Digest version is that back in April of this year a knot in my neck was MRI'd and showed to be a cyst. It was removed in May but the Path report showed cancer with HPV16 present. The Path said that means it probably came from the tonsil area. So on 7/25 my ENT went in with a scope and sure enough my left tonsil was inflammed. They removed it and my adenoids and checked the entire area finding nothing else. The Path report showed squamous cell carcinoma in the tonsil and nothing else. Followed that with a PET scan which indicates no other cancer in my body except at the base of where the tonsil came out. The good news is that SCC responds well in place with IMRT radiation and chemo. In my case they say I have a 90% chance of total cure and cancer free at 5 years, with the odds improving after that. So, I intend to hold them to that.

    My current status, on 9-10 I am starting 35 daily radiation treatments with once a week chemo (low-dose cisplatin). Feel free to email me directly by clicking on the email icon below the message. I am a fairly Newbie but will help all I can. But, as everybody will tell you....hang in there, be positive, listen to your Docs and you'll get through this. Also, be sure to remember that you are your own best healthcare advocate. Ask lots of questions, take detailed notes, challenge anything you are not comfortable with. Be well, God Bless....JK
  • Beejoo3
    Beejoo3 Member Posts: 6
    #4
    jkinobay said:

    As these compassionate CSN friends told me a few months back.........congratulations on being a Cancer Survivor........you will get through this. It may not be your idea of a fun trip but you WILL get through it.

    I could not possibly improve on what hipwr1 said....all excellent advice, much of which I have had to focus on myself in recent days. I can only add that I do have tonsil cancer. The Reader's Digest version is that back in April of this year a knot in my neck was MRI'd and showed to be a cyst. It was removed in May but the Path report showed cancer with HPV16 present. The Path said that means it probably came from the tonsil area. So on 7/25 my ENT went in with a scope and sure enough my left tonsil was inflammed. They removed it and my adenoids and checked the entire area finding nothing else. The Path report showed squamous cell carcinoma in the tonsil and nothing else. Followed that with a PET scan which indicates no other cancer in my body except at the base of where the tonsil came out. The good news is that SCC responds well in place with IMRT radiation and chemo. In my case they say I have a 90% chance of total cure and cancer free at 5 years, with the odds improving after that. So, I intend to hold them to that.

    My current status, on 9-10 I am starting 35 daily radiation treatments with once a week chemo (low-dose cisplatin). Feel free to email me directly by clicking on the email icon below the message. I am a fairly Newbie but will help all I can. But, as everybody will tell you....hang in there, be positive, listen to your Docs and you'll get through this. Also, be sure to remember that you are your own best healthcare advocate. Ask lots of questions, take detailed notes, challenge anything you are not comfortable with. Be well, God Bless....JK

    I am a year and a half out of treatment for right tonsil cancer. I had a feeding tube for over a year then 2 throat dilitations. I still cannot really eat anything due to lack of saliva but make a high protein soy/peanut butter/yogurt drink every morning. This type of cancer is a very rough road but eventually is does get better. All the advice of other posters is very good. You will get through this!
  • gmommy
    gmommy Member Posts: 2 Member
    #5
    Three year "survivor" here!! I had tonsil cancer in the right tonsil. Did 7 weeks radiation, 6 weeks of a trial chemo. Had the peg tube for 6 months. Thankful for that peg tube. Highly recommend one to anyone starting a treatment plan for any kind of oral cancers. Get the tube BEFORE treatment begins. By the second week of radiation I wasn't even able to drink water. The mouth sores alone made it impossible. After treatment starts is to late. You don't want to have to stop your radiation or chemo because of dehydration. Remember it's all cumulative. The idea is to keep going. It took about 6 months for my taste to return to normal. And about a full year for my saliva to improve. It's not 100% but I don't need to carry a water bottle all the time. My radiologist said a month for every week of treatment before it gets better. I found that to be true. One the positive side, the first tastes to return were chocolate and coffee!!

    My doctors were fabulous and I loved them. I felt safe in their hands. It's important that you feel the same. It helped me get thru the whole thing. Hang in there. You will get thru it! If I can answer any other questions let me know! I will check back.
  • tracy_csn
    tracy_csn Member Posts: 15 Member
    #6
    2.5 year survivor here (I also just posted in Carney's msg above...). Left tonsil; neck dissection, synergistic chemo, 39 sessions of radiation. Peg tube for 6 mos, and IV port so that they could do daily IV's of ambiphostine and the cysplatin chemo. My challenge in eating again was that all taste was burned off my tongue and I could not swallow the cardboard and woodchips that all food became, so I kept using the tube till most of my taste returned. Took about 6-9 months to get taste back. Longer to get over fatigue and to have dry mouth improve. Still carry water, and use Biotene Oral Balance (which I cannot recommend too highly, and I wish I had known about it while I was getting radiation...). Current continuing challenge is neck pain and eternal tightness, so I also recommend PT (physical therapy) immediately after surgery. I do daily stretches as well as upper body weight training with small weights. Also massage by LMTs twice a month. I also tried accupuncture, but it didn't seem to help me much.
    If you have specific questions, fire them away at us... the survivors are out here :)
    Oh, and I attend a Head and Neck Survivor's Group once a month. I highly recommend that you find one asap... sharing with others who understand your experience is invaluable.
  • Nicole92
    Nicole92 Member Posts: 1 *
    #7
    https://csn.cancer.org/discussion/comment/587825#Comment_587825

    How are you now your post really inspired me

  • wmolivertx
    wmolivertx Member Posts: 16 Member
    #8

    I had stage 4 tonsil cancer back in 2000. Did six weeks of radiation and a trial drug but no surgery. Its a long journey and can be scary as hell sometimes, just remember to keep a positive attitude as down the road your life will change so you have to adapt. As a nurse at MD Anderson told me many years ago, radiation is a gift that keeps on giving.

    I wish you the best and keep fighting.

  • wmolivertx
    wmolivertx Member Posts: 16 Member
    #9

    To help with a dry mouth, especially at night, I would recommend XyliMelts. These little discs adhere to the gum and can provide up to 8 hours of moisture. Just put it between cheek and gum and you are all set.

  • Bobbykart
    Bobbykart Member Posts: 2 Member
    #10

    Welcome to discussion, I’m new also, finished rad/chemo May 20. Tonsil cancer was the diagnosis. Any how I got samples from my dental office for dry mouth , tried all the biotene products (except the gel) and Xylimelts have worked great at night.

  • loetall
    loetall Member Posts: 3 Member
    #11


  • loetall
    loetall Member Posts: 3 Member
    #12

    I am new to this site and reaching out for suggestions and thoughts concerning what feels like a burning tongue 24/7.

    I recently completed the 35 Radiation treatments and 5 Chemo treatments (originally was supposed to be 7). I tolerated all treatments until week 5. By that point I was having difficulty swallowing and was having difficulty speaking. I was hospitalized for dehydration for 8 days. While in the hospital the pain I felt was a severe burning sensation in my mouth and tongue. A feeding tube was put in while I was hospitalized. I have been out of the hospital for 3 weeks; treatments were completed 2 weeks ago; I am on a pain patch that we are weening down; and I use a feeding tube.

    Every day is a little better, but the burning sensation continues with my tongue, and I still can't swallow or talk very well. I use the baking soda, salt and water solution most all day, and when I wake in middle of night. The miracle mouthwash I tried lit my mouth on fire.

    Any thoughts and suggestions to help with the burning? How long (I know that differs) this may continue?

  • Bobbykart
    Bobbykart Member Posts: 2 Member
    #13

    Hi loetall

    fmy experience was after my 35th rad treatment, my oncologist said I would actually feel worse for the next 10 days.

    Dr was correct, apparently the radiation keeps working after treatment stops. I tried 2 or 3 pain meds. Luckily I had on hand liquid Hydrocodone acetaminophen, need it every 6 hours for 12 days, as the throat pain was severe. I also had the feeding tube for 3 months. My Rad doctor prescribed the Hydrocodone acetaminophen, it was a necessary drug to get me through it. hang in, is is temporary.

  • mcb2005
    mcb2005 Member Posts: 16 Member
    #14
    https://csn.cancer.org/discussion/comment/587825#Comment_587825

    just diagnosed with right tonsil and a lump in my neck. What is a peg tube? I’m looking at 6.5 weeks of radiation. Luckily we found it earl, stage 1. Hoping the treatment goes well.

  • loetall
    loetall Member Posts: 3 Member
    #15

    Peg tube is commonly known as a "Feeding Tube"

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    https://csn.cancer.org/discussion/comment/1704167#Comment_1704167

    Hey there..

    I had a very similar Dx as you, only I was STGIII (HPV derived). That was in January 2009. I was Dx by my ENT on Friday, tonsils out on the following Monday, and then a few weeks later I was hooked up with an Oncologist, and the Radiation MD.

    Back then the protocol (for me) was 9 weeks (3 week cycles) of Cisplatin, Taxotere and 5FU. After that 7 weeks of weekly Carboplatin, and daily IMRT Radiation.

    A large dose of everything, but as I said, that was early 2009.

    I still followup with my ENT annually, as well as my Onco, scopes and scans.

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