What to expect now

Dave705
Dave705 Member Posts: 62 Member
in Head and Neck Cancer #1

3 weeks ago had an enlarged lymph node on right side of neck removed that had not grown in 2 years. Came back testing positive for cancer. Had PET scan which showed nothing, then had ct scan which showed nothing. Then had tonsils removed and 4 mm host was found in right tonsil. All other lymph nodes seem to be OK. But am very worried on what happens next. Recovery from the tonsil removal at 54 is very tough, so I can't even imagine what my recovery from whatever happens next will be like. The surgeon has recommended radiation but now they also what me to see a doctor for chemo. They can't seem to find anything else wrong, so I am getting very worried on what happens next. Been healthy my whole life and was not prepared for this. Any help would be appreciate.

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Comments

  • Logan51
    Logan51 Member Posts: 468 Member
    edited April 2020 #2
    Similar to a degree

    I was 54 when I went thru tx, concurrent Rads&Chemo, for NPC unknown Primary. My biopsy sample went to the U of Iowa lab and came back Nasopharyngeal, but they never could find a tumor/host. At least you know it was in the Tonsil. Best suggestion I can give is to get a 2nd opinion on the tx plan- unless you are already at a major C Medical Center. It was a struggle for me at 54, but I reckon it's more a mental test, you know. You're gonna survive whatever tx they give you- we all do, post-1st bout.

  • Dave705
    Dave705 Member Posts: 62 Member
    edited April 2020 #3
    Logan51 said:

    Similar to a degree

    I was 54 when I went thru tx, concurrent Rads&Chemo, for NPC unknown Primary. My biopsy sample went to the U of Iowa lab and came back Nasopharyngeal, but they never could find a tumor/host. At least you know it was in the Tonsil. Best suggestion I can give is to get a 2nd opinion on the tx plan- unless you are already at a major C Medical Center. It was a struggle for me at 54, but I reckon it's more a mental test, you know. You're gonna survive whatever tx they give you- we all do, post-1st bout.

    Thanks

    Thanks for responding. Trying so hard to stay positive through this. Appreciate your thoughts 

  • Logan51
    Logan51 Member Posts: 468 Member
    edited April 2020 #4
    Tonsil

    Do know of others your age w/Tonsil. Skiffin was one, and he's 10+ years out to the good living a great life in Florida. Time you are in now is the worst for most of us- not knowing what's next, and worried about worst-case scenarios. Ain't gonna happen. Lot of progress treating H&N C over the past 20 years. I'm 11 years out to the good, now. Treatment can be rough, and there are usually side-effects, but I reckon they are acceptable. You'll be fine. Just keep your mind in the Positive, and let your Dr.s know exactly how you are doing- that's the only way they'll know how to help during and after tx.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited April 2020 #5
    What They Are Doing

    Is mop up for cancer cells that may be lingering. Chemo and rads are the normal modes they use. The standard seems to be 35 rads with chemo beginning, middle, and at the end. Check with your team what kind of chemo you are getting and ask about the rads so you know what to expect. You will be tired and maybe nauseous among other things but there are drugs to help with nausea. Being tired is another thing, you just have to rest. Food may taste bland to no taste at all for a while till after treatment and your taste comes back. Platin based chemo drugs are used a lot but can have some pretty significant side effects on some people. Check with your team as I said and let them know you are concerned about after-effects and leftovers after treatment. Check the super thread at the top of our head and neck page there is info in there about chemo and rads and after-effects. You can expect to have saliva and taste affected by rads for awhile and things like neuropathy and other effects from chemo but you want to make sure there is no cancer left in your body and this is the way they do it-best of luck-any more questions ask away-Take Care-God Bless

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #6
    On the positive side.. my

    On the positive side.. my husband at 68 yrs old, had his tonsils removed before radiation and chemo. The 14 days after his surgery were the worst days of his 8 week  treatment. He breezed thru rads and chemo, in comparison to the recoup from surgery.  I had a different e experience, so we know both sides . If you need any help, reach out. We are here to help! ❤

  • Dave705
    Dave705 Member Posts: 62 Member
    edited April 2020 #7
    wbcgaruss said:

    What They Are Doing

    Is mop up for cancer cells that may be lingering. Chemo and rads are the normal modes they use. The standard seems to be 35 rads with chemo beginning, middle, and at the end. Check with your team what kind of chemo you are getting and ask about the rads so you know what to expect. You will be tired and maybe nauseous among other things but there are drugs to help with nausea. Being tired is another thing, you just have to rest. Food may taste bland to no taste at all for a while till after treatment and your taste comes back. Platin based chemo drugs are used a lot but can have some pretty significant side effects on some people. Check with your team as I said and let them know you are concerned about after-effects and leftovers after treatment. Check the super thread at the top of our head and neck page there is info in there about chemo and rads and after-effects. You can expect to have saliva and taste affected by rads for awhile and things like neuropathy and other effects from chemo but you want to make sure there is no cancer left in your body and this is the way they do it-best of luck-any more questions ask away-Take Care-God Bless

    Thanks so much for the advice

    Thanks so much for the advice.

  • Dave705
    Dave705 Member Posts: 62 Member
    edited April 2020 #8
    Thanks so much for your info.

    Thanks so much for your info. Will keep my spirits up that it may not be as worse as tonsil remoVal.

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #9
    Sort of the same thing here

    Agree with the others about the mop up.  I went though about the same thing after node removal.  Exeept mine was a none specific site neck cancer  They removed a buch of lymph nodes on my left side then did radiation and chemo.  Was it fun, no way.  A bit of hell on eath.  Did get though it.  Sarted out easy enough, but then got very rough towards the end.  A cancer group and my family was a big help.  Ir wa way worth it.  Some people have almost no issues with radation and chemo others struggle quite a bit.  The doctors and staff can work you though it.  People on this board and in groups are a big help.

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited April 2020 #10
    Dave,

    My situation was very similar, had swelling in my neck removed. It came back malignant. My ENT found the original site in my left nasal passage (NPC Nasal Pharyngeal Cancer).

    The site in my nasal passage was so small, it did not show up on PET or CT Scans.

    My Oncologist told me that this Cancer is very treatable, if it's contained to "above the collarbones". So, it is VERY heartening to hear that you aren't showing signs anywhere else.

    I wish you all the best with any treatment you may have to get. It can certainly be challenging at times, but you're in the right place here - for support.

    Please feel free to reach out to me, or any of us - in forum or private messaging. You'll find everyone on here will do everything they can, to help you with information and advice!

    I'm sending a prayer your way!

    mg

  • skidog
    skidog Member Posts: 74 Member
    edited April 2020 #11
    same here

    Similar situation as mine. look at my first post on this board. i go into great detail on my journey. 2 years out now and doing great. 95% back to normal. you got this!

  • Dave705
    Dave705 Member Posts: 62 Member
    edited April 2020 #12
    skidog said:

    same here

    Similar situation as mine. look at my first post on this board. i go into great detail on my journey. 2 years out now and doing great. 95% back to normal. you got this!

    Read your whole journey. So happy for you, for beating this. I will hope to add my name to that list in a few month. Thanks Again

  • Dave705
    Dave705 Member Posts: 62 Member
    #13
    Radiation Doctor appointment day

    Saw my radiation doctor today. Had news which was better then expected. Only going to have to have 6 weeks of radiation on my tonsil, where the tumor has been removed. And radiation on right side of neck only. I was diagnosed with Stage 1 as they got it early. Thanks to all the support from everyone on this site. Gonna fight through the side effects and beat this.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #14
    Glad For You Dave

    That you have gotten news that was better than expected that's always great when that happens. I am glad this site has been a great help to you as it has for me. As you said you will keep fighting and get through this-Amen-Take Care-God Bless

  • Dave705
    Dave705 Member Posts: 62 Member
    edited April 2020 #15
    wbcgaruss said:

    Glad For You Dave

    That you have gotten news that was better than expected that's always great when that happens. I am glad this site has been a great help to you as it has for me. As you said you will keep fighting and get through this-Amen-Take Care-God Bless

    Thank you

    Thanks so much. Stay safe as I think I saw you are in Lancaster county Pa. I am in Berks County. Appreciate your thoughts.

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #16
    Great News

    It will be a journey and a bit of a struggle, but now you know what you are facing.  It seems you have the best possible news.  Side effects seem to really vary from person to person, but since you are having on right side only and for 6 weeks that seems good.  Keep us informed how it’s going.  I found a group in my local community and it was a big help when I was going though treatment and after.  The medical group had a counselor who really helped me.  I was going to be a tough guy, soon learned how foolish that was

  • Mavish
    Mavish Member Posts: 93 Member
    edited April 2020 #17
    Hi Dave,

    Hi Dave,

    I went thruogh same thing.I had a big  right lymph node, they couldn'se anyting in PET MRI. They found SCC in the rigth tonsil, when they took it out. This was 4 years ago. They also remove my lymphnodes on the right side. All were normal. I saw both radiation and medical oncologists. They decided to proceed with just RT. I did not take Chemo. If your cancer is p16 positive, there were studies ongoing 4 years ago investigating less intensive therapies for p16 positive SCC. I am cancer free but suffering from long term radiation side effects( they are not too bad). I suggest you to discus your doctor all treatment options, especially ones less intensive. For example they are giving Radiation little less tha p16 - cancers. This is important for long term life quality.  Journey  is tuff but this is a curable cancer. I wish all the best and good luck.

  • PipLily
    PipLily Member Posts: 127 Member
    edited April 2020 #18
    debbiel0 said:

    On the positive side.. my

    On the positive side.. my husband at 68 yrs old, had his tonsils removed before radiation and chemo. The 14 days after his surgery were the worst days of his 8 week  treatment. He breezed thru rads and chemo, in comparison to the recoup from surgery.  I had a different e experience, so we know both sides . If you need any help, reach out. We are here to help! ❤

    Good to hear!

    Hi! Great to hear....my husband just had TORS where they worked on left tonsil and base of tongue. He had so much post op pain for 14 days, then it was like immediately, he turned the corner and did great! Hopefully our experience when radiation starts soon will be like yours!

  • PipLily
    PipLily Member Posts: 127 Member
    edited April 2020 #19
    Dave705 said:

    Radiation Doctor appointment day

    Saw my radiation doctor today. Had news which was better then expected. Only going to have to have 6 weeks of radiation on my tonsil, where the tumor has been removed. And radiation on right side of neck only. I was diagnosed with Stage 1 as they got it early. Thanks to all the support from everyone on this site. Gonna fight through the side effects and beat this.

    Awesome news ....

    Sounds like my husband is at about the same place time line wise as you. Gets fitted for his mask Monday......had TORS mid March. Wishing you the very best!! Happy for your good news for you! Take care! 

  • Dave705
    Dave705 Member Posts: 62 Member
    edited April 2020 #20
    Mavish said:

    Hi Dave,

    Hi Dave,

    I went thruogh same thing.I had a big  right lymph node, they couldn'se anyting in PET MRI. They found SCC in the rigth tonsil, when they took it out. This was 4 years ago. They also remove my lymphnodes on the right side. All were normal. I saw both radiation and medical oncologists. They decided to proceed with just RT. I did not take Chemo. If your cancer is p16 positive, there were studies ongoing 4 years ago investigating less intensive therapies for p16 positive SCC. I am cancer free but suffering from long term radiation side effects( they are not too bad). I suggest you to discus your doctor all treatment options, especially ones less intensive. For example they are giving Radiation little less tha p16 - cancers. This is important for long term life quality.  Journey  is tuff but this is a curable cancer. I wish all the best and good luck.

    Thanks

    Thank you so much for the wishes. My radiation doctor has told me of long term side effects, mostly dry mouth. looking forward to June, as that is when my treatments will be over.

  • big G
    big G Member Posts: 177 Member
    #21
    Dave705 said:

    Thanks

    Thank you so much for the wishes. My radiation doctor has told me of long term side effects, mostly dry mouth. looking forward to June, as that is when my treatments will be over.

    Treatment

    Dave705

    Sounds like you caught it early. Radiation tx affects people differently, I think most have the dry mouth, some get burns some don't. Remember to keep drinking and eating even if you loose your sense of taste as I did in week 2. I used Aquaphor daily after treatments which I believed leaving my neck with no redness or burn. It is a little greasy but it works. You will find products to help you with the dry mouth. Good luck and god bless

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