What to expect

ditto1
ditto1 Member Posts: 660
in Head and Neck Cancer #1

if I have to have a partial neck dissection.  Im creating a second post to my thoughts post.  Seems the ENT will want to do another exam after the results of my PET scan, seems the SUV count (SUV count is picked up on the PET and I googled it, very confusing but seems to be related to many possibilities)
 did drop from over 16 to around 7 which the Ent will want to possibly to a biopsy but not sure how and where, I do not feel any lump like I did back in March but I seem to have other symptoms from that time the ear ache for over a week now and a sore stiff neck and sore thoart.  I know much of that could be post radiation but if I have to have a neck disection I was wanting to know what to expect, as many of you know I use crutches and a wheel chair, although you may not relate you would know if you thought it could affect my arm use...  also how long is the hospitalization and if they have to remove a portion of the tongue how tough is that.  I know Im just jumping way ahead of mayself but must admit Im scared.  I so hoped as we all did that if i could survive the original fight I would be ok but just not sure Im able to fight again with this disease, I apologize to all those who have fought it more than once for my attitude but its just the way I feel. 

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Worst case scenario

    As I said, I had a full radical neck disection a number of years ago.   Incision from mastoid to clavical, and across neck as well.  Sixty six nodes removed as well as sternomastoid muscle.  Three drains, which were removed a couple of days post op.  You won't have anything like this extensive an operation.  Mine hurt a fair amount for one day, not nearly as much on the second day, and the third day I went home.  I was off work for two weeks, then back to work full time.  This surgery wasn't anything near as hard as the radiation.  Not even close.

    Pat

     

  • ditto1
    ditto1 Member Posts: 660
    #3
    longtermsurvivor said:

    Worst case scenario

    As I said, I had a full radical neck disection a number of years ago.   Incision from mastoid to clavical, and across neck as well.  Sixty six nodes removed as well as sternomastoid muscle.  Three drains, which were removed a couple of days post op.  You won't have anything like this extensive an operation.  Mine hurt a fair amount for one day, not nearly as much on the second day, and the third day I went home.  I was off work for two weeks, then back to work full time.  This surgery wasn't anything near as hard as the radiation.  Not even close.

    Pat

     

    As aways thank you

    for responding. 

  • Pam M
    Pam M Member Posts: 2,196
    #4
    I Had the Modified Radical Neck Dissection

    It varies from person to person.  The pain I experienced wasn't bad (this was my last cancer treatment, after a tonsillectomy as an adult, then induction chemo, then chemo rads). 

    As always, effects vary.  As I recovered from the surgery, I discovered I had limited movement of my neck, shoulder, and right arm (side where nodes were removed).  I highly recommend you schedule physical therapy after surgery - seems to me folks who do "real" therapy do better.  I had tender/numb/odd areas from near the top of my head (all on the right side) to the back, including my ear, jaw, lower face, neck, upper chest, shoulder, and top of right arm.  My smile was obviously lopsided, and I noticed my face is now assymetrical (I'm sure, though, that this is thanks to rads).  When I would roll my head (gentle yoga class) or turn my head "too far", I'd get a pain that ran along the side of my face to the top of my head.

    Two years out, I still have some limitations.  BUT - I continue to make progress.  I cannot raise my hand straight above my head unless I push it up with my left hand.  From the forward lift, I can get almost as high as a Nazi salute (not that it comes in handy).  After surgery, my movement was not nearly as good as now.  Even a year ago, my movement at work when using a keyboard, and moving to mouse was obviously awkward and labored.  It's MUCH better now - I don't think anyone would notice, but I can feel I'm still "off".

    Wow - this looks bad - in reality, it's not as bad as it sounds here.  I'm smiling now, and don't think anyone else would notice my smile is a little lopsided.  I still feel tightness in my neck, but have very good range of motion.  I'm still making progress. 

    For what it's worth, my arm's range of motion has been much better in the "down" position.  I'm trying to make what I guess would be motions you'd make using a wheelchair.  for me, this would have been iffy just after surgery.  I'm sure though, that even if you end up with the same types of issues I did, some good physical therapy would help you progress much faster than I did. 

    I was only in the hospital three days, and only that long because I failed swallow tests at first.  I could've gone home sooner if I'd done better swallowing (they threatened me with a new feeding tube, and I got with the program).

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Thoughts & Prayers...

    I can't contribute to the dissection topic....

    But I can definitely offer my thoughts and prayers.

    Best ~ John

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #6
    Some info

    Ditto1,

    I can understand your concern, I would agree with what Longtermsurvivor (LTS) mentioned above. I had part of my tongue removed, radical neck disection with the SCM muscle removed, 3 drains like LTS, Trach, Peg Tube. This list is not to scare you, but to provide you the answers to your questions.

    Like LTS, I was out of the hospital in 3 days basically, at no time was I ever in any pain. The pain med's kept that at bay. My only discomfort was the Trach as it would touch the back of my throat when I would fall asleep in the chair and my head fell forward.

    Your concern about your strength in your arms is legit.  I only lost partial strength on the right side where the SCM muscle was removed. I think you will still be able to use your crutches and wheelchair without to much difficulty, I think you will still have the strength to do this. My right side strength came back slowly by just doing everyday things around the house. I did later have an issue with swelling in my face and neck, due to the disection, which caused me to seek Physical Therapy from a Cancer Lymphadema Therapist.  She had me do some more therapy for my right side arm strength while I was there for the Lymphadema treatments and lessons for the massages.

    You can find a post of mine about Stretching and Massage Instructions in the Superthread at the top of the board if I don't do the link correctly.

    http://csn.cancer.org/node/196680

    My Best to You and Everyone Here

  • ditto1
    ditto1 Member Posts: 660
    #7
    MarineE5 said:

    Some info

    Ditto1,

    I can understand your concern, I would agree with what Longtermsurvivor (LTS) mentioned above. I had part of my tongue removed, radical neck disection with the SCM muscle removed, 3 drains like LTS, Trach, Peg Tube. This list is not to scare you, but to provide you the answers to your questions.

    Like LTS, I was out of the hospital in 3 days basically, at no time was I ever in any pain. The pain med's kept that at bay. My only discomfort was the Trach as it would touch the back of my throat when I would fall asleep in the chair and my head fell forward.

    Your concern about your strength in your arms is legit.  I only lost partial strength on the right side where the SCM muscle was removed. I think you will still be able to use your crutches and wheelchair without to much difficulty, I think you will still have the strength to do this. My right side strength came back slowly by just doing everyday things around the house. I did later have an issue with swelling in my face and neck, due to the disection, which caused me to seek Physical Therapy from a Cancer Lymphadema Therapist.  She had me do some more therapy for my right side arm strength while I was there for the Lymphadema treatments and lessons for the massages.

    You can find a post of mine about Stretching and Massage Instructions in the Superthread at the top of the board if I don't do the link correctly.

    http://csn.cancer.org/node/196680

    My Best to You and Everyone Here

    Thank you

    all for your replies, I pray Im ahead of myself on exactly what we will learn on Monday and if its something concerning or just an over active PET scan.  If it was not for the ear ache almost 3 weeks straight now and neck ache would be less concerned.  The ENT is planning on doing a scope and something about a biobsy but not sure how that works since I feel no lump which is what I had back in March when first dx which they took the biobsy.   Its the waiting that takes its toll, but again thank you all for taking the time to give me your thoughts.

  • ditto1
    ditto1 Member Posts: 660
    #8
    50/50

    Just back from ENT/ONC well the PET lit up with enough ? that they will be wanting to do a biopsy under antestesia in a few weeks to see if the cancer was not completely removed or simply returned.  She then advised / described the neck surgery I would need if its cancer.  SCARED yep, I just hope and pray its not cancer.  REALLY Im tired just wanted it to e behind me (I realize Dah didnt we all so I apologize) but I guess I just know I will have to deal with it, anyway thanks again for FYI should the biopsy show surgery will be needed in letting me know what to expect. 

  • blackswampboy
    blackswampboy Member Posts: 341
    #9
    ditto1 said:

    50/50

    Just back from ENT/ONC well the PET lit up with enough ? that they will be wanting to do a biopsy under antestesia in a few weeks to see if the cancer was not completely removed or simply returned.  She then advised / described the neck surgery I would need if its cancer.  SCARED yep, I just hope and pray its not cancer.  REALLY Im tired just wanted it to e behind me (I realize Dah didnt we all so I apologize) but I guess I just know I will have to deal with it, anyway thanks again for FYI should the biopsy show surgery will be needed in letting me know what to expect. 

    biopsy

    I had a biopsy of necrotic tissue under general anesthetic in November. the procedure itself was tolerable, because they knocked me out and I went home the same day. not pleasant, but tolerable. they did prepare me for the possibility of waking up with a trach if things didn't go well, but that didn't happen. pain following was also bearable--they gave me a script for tylenol with codiene and that got me through.

    hoping yours comes back clean!

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