Joining the Tonsillectomy Club and the Triple Endoscopy Club

Hi, 

I guess I dont have an unknown primary anywhere.  They did see the pyriform tumor and then my PET scan lit up my left tonsil and something in the base of my right tongue.  My lymph node was on the left.  So tomorrow they are going to do the surgery.  Then they think they want to do concurrent rad and chemo, only doing a neck disection/resection thing if PETS are abn after all of that.  Just love to hear from you guys that have personal experiences.  I learn so much.  I guess next week Radiation starts.  Nonstop sore throat I guess.  Thanks for all your posts.  Karen

Comments

  • Barbaraek
    Barbaraek Member Posts: 626
    Prayers

    That the surgery goes well. You'll find lots of good advice about managing chemoradiation here. Look for answers by putting key words in the search bar or post them as they come up. It's a long tough road Karen but you CAN do it! We've got your back here and will be cheering you on.

    Barbara

  • MrsBD
    MrsBD Member Posts: 615 Member
    We're Here

    Karen, we'll be here for you with advice, encouragement, and prayers. I hope all goes well tomorrow. 

    Beth

  • jakesaround
    jakesaround Member Posts: 34
    Thinking about you...

    well I guess it's good news that they have been able to identify some hot spots but of course this is news we never want to get either and I am sure it's not very encouraging to have 3 hotspots plus the lymph node make 4 :( but at least now you know better what to do and expect. Are you gonna have all three operated on and removed (meaning tonsils, tongue partial I assume, and pyriform also partial)?

    i had both tonsils and rt modified neck dissection also with biopsies taken from the back of tongue and pyriform as well. So as you probably know from my main post the tonsils and pyriform heal pretty quickly together after 10 days those two really were not bad and after 14 they were ready for most hard foods. the tongue on the other hand hurt so bad and I just had a needle biopsy done it just felt like a super deep bruise and after 14 days it was still sore but manageable to eat real food with. I am sure a partial tongue operation is going to be rough for a while longer.

    I have heard some docs just removing 1 tonsil that shows up hot but if I were you make sure they take both sides out. It's not going to make your recovery any worse and then it just eliminates a place for the unthinkable cancer to return to in the future. (of course we all hope and pray this won't happen) my doc said the tonsils are really a breeding ground for cancer and infection so I was happy to get both of my tonsil rejects out even though only one was "infected"

    on that note once you get your surgery pathology report back which could take 7-10 days you will have the real answers to where the cancer really is. dont be surprised if it's not in all three areas. PET scans are notorious for showing "cancer hot spots" only later to reveal no cancer under a microscope. Especially the tonsils do this but I would get them out regardless due to what I mentioned above.

    also check with your doc but I would think they would give you a few weeks to heal up from surgery before chemo and rads start. I think the standard window for starting chemo and rads after surgery is 4-6 weeks. You need to heal and get your strength and eating on track before Chemoradiation starts. But you will have many meetings with the oncology docs and there will be simulations and treatment plans made so it will take some time to get everything lined up.

    i will be pulling and praying for you and you can do this.

    hope this helps a little I definitely don't want to add any worry to your plate things will become more clear after the surgery path report comes out.

    jake...

  • wmc
    wmc Member Posts: 1,804
    Sounds about normal for that

    That sounds pritty much normal. I had the neck dissection on both sides level II - V. I have had less problems then most. One side is numb and most likely always will be. I can rase both arms up over my head and some can't. They took 48 on the left and 38 on the right side as a precaution. I do take a muscle relaxer every day so I can turn my neck the same as before but I also have several bone spirs for 10 years that act up. 

    You will be on a rough ride so remember you are not alone in this. If you have questions for your doctor write them down, it is best that way. Be honest with your caregiver/loved one as they are just as scared as you. Having chemo and radition can be very rough. A few go through with very little problems. I'm not trying to scare you but I don't want to sugercoat it ether, just being honest. You will get through this journey and come through ok. Get a positive attitude as it really does help. Others will be able to answer more about chemo and radition as I only had surgery and my larynx removed I just had my two year mark and all is well. You will be too. Just take one day at a time, and only today matters. You will be in my thoughts and prayers, and you will be ok. Only five people thought I would make it but I knew I would and be fine. You will find you are so much stronger than you ever knew..........

    Bill

  • kdot2003
    kdot2003 Member Posts: 143
    Pain Pain Pain

    I hope this doesnt mean I am going to be wimpy with Radiation but my throat hurts like HELL and worse it feels swollen so every time I drink I feel like its going to get stuck. My hydrocodone liquid puts me out but of course it hurts more after.   Tips?

  • jakesaround
    jakesaround Member Posts: 34
    kdot2003 said:

    Pain Pain Pain

    I hope this doesnt mean I am going to be wimpy with Radiation but my throat hurts like HELL and worse it feels swollen so every time I drink I feel like its going to get stuck. My hydrocodone liquid puts me out but of course it hurts more after.   Tips?

    Help is on the way...

    kdot,

    Can you give us some more details on what you had operated on in surgery? Are you still in the hospital or at home now? Which parts are hurting the most?

    I was able to manage my pain with the liquid ibuprofen, which I think is basically the same as childrens Motrin if you need to buy it at the pharmacy. I tried the hydrocodone one night and it definitly knocked me out but it didn't keep my pain away any longer than the ibuprofen.

    Sorry for asking such specific questions when I know you are suffering but I feel more folks could help if we knew a few more details.

    I hope you can get some rest today and probably in about 7 days you will start to turn a corner on this recovery process.

    And dont worry about the rads and chemo yet just focus on getting better from surgery.

    Jake...

    PS: Also i really liked warm chicken broth and jello in the first week or so of recovery and the docs told me to stay away from dairy based products like ice cream as the dairy produces excess mucus which will just irritate your throat even more as you constantly try and clear it.

  • kdot2003
    kdot2003 Member Posts: 143

    Help is on the way...

    kdot,

    Can you give us some more details on what you had operated on in surgery? Are you still in the hospital or at home now? Which parts are hurting the most?

    I was able to manage my pain with the liquid ibuprofen, which I think is basically the same as childrens Motrin if you need to buy it at the pharmacy. I tried the hydrocodone one night and it definitly knocked me out but it didn't keep my pain away any longer than the ibuprofen.

    Sorry for asking such specific questions when I know you are suffering but I feel more folks could help if we knew a few more details.

    I hope you can get some rest today and probably in about 7 days you will start to turn a corner on this recovery process.

    And dont worry about the rads and chemo yet just focus on getting better from surgery.

    Jake...

    PS: Also i really liked warm chicken broth and jello in the first week or so of recovery and the docs told me to stay away from dairy based products like ice cream as the dairy produces excess mucus which will just irritate your throat even more as you constantly try and clear it.

    THanks so Much

    Hi I will try liquid ibuprofen for sure.  I had both tonsils out, alot of biopsies in there and a right base tongue biopsy yesterday at 1200.  

    Thanks!!  So far ive been gargling wih warm salt water and taking liquid narc but it doesnt help.  I'm at home.  Havent eaten yet ...havent tried jello I mean.  Drank about 4 oz gatorade.

  • wmc
    wmc Member Posts: 1,804
    kdot2003 said:

    THanks so Much

    Hi I will try liquid ibuprofen for sure.  I had both tonsils out, alot of biopsies in there and a right base tongue biopsy yesterday at 1200.  

    Thanks!!  So far ive been gargling wih warm salt water and taking liquid narc but it doesnt help.  I'm at home.  Havent eaten yet ...havent tried jello I mean.  Drank about 4 oz gatorade.

    Make sure you stay hydrated.

    With your tonsils out and the biopsies you will be sore and in some pain. That is why they gave you Hydrocodone. It is a 5 on the painkiller chart and ibuprofen is at best 2.5, but if it works and does not knock you out thats good. As a kid growing up they always said you could have all the ice cream you wanted when they removed tonsils, but no one ever felt like having any ethor. You're dooing good......

    Bill