How do they decide on neck dissection post chemorad? Most who had it have side effects?

RogerRN43
RogerRN43 Member Posts: 185
edited November 2011 in Head and Neck Cancer #1
Been reading people's experiences with their neck dissections and it doesn't sound so easy.
Do most people have side effects and long term symptoms from their neck dissections?

Primarily, how do they exactly decide if you need one after you're done with chemorad treatments?

(I am left tonsil SCC, left lymph involvement. 2/3 Cisplatin done, 20 rads in out of 35, the lymph started as a large grape, now it's down to a peanut size).

Comments

  • osmotar
    osmotar Member Posts: 1,006
    #2
    Surgery
    I asked my hemotology onco about surgery and she said she didn't think I would require it. After my second(I had a total of 3) infusion of cisplatin/toxetore/5fu the rt lymph node was effected , the lump was gone, my rt tonsil was the primary site. When I saw the rad oncologist he said the lump was gone as well, he scheduled me for 39 rads, plus I have 1 day a week of cisplatin. Sometimes I think it's a judgement call, each doctor like each one of us is different.
  • jtl
    jtl Member Posts: 456
    #3
    Roger
    Seems to me if there is nothing left then what is there to remove. In my case I had a single enlarged lymph node that was removed for a biopsy. When the results were conclusive I had a PET scan to find the primary which was a very small area and no further lymph node involvement per the PET and the visual exam by the ENT during the surgery. Now the primary is fried so no need for additional surgery.

    I have some experience with prostate cancer and when people get the seeds it shrinks the gland to almost nothing and it is not removed. Problem is you never know if the cancer was incapsilated in the prostate or if it escaped since you cannot biopsy to check the margins.

    Just think only 3 weeks left and then it is recovery time.
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #4
    No brainer for me
    I didn't need a neck dissection in 2010 after cancer was found in upper lip. Had quite a surgery and then radiation. In June 2011 a lump on the opposite side on neck, biopsy, mets--I wanted it out. Neck dissection wasn't so horrible. It was much easier for me to eat than having an inch of my lip removed and then stitched back together. Radiation was lower this time. Scar is in crease of neck, wrinkle! Has healed well except for a lump that poped out 4 weeks ago--getting it excised tomorrow. I sit in back at church so I can see the overhead (music). My movement is much better weekly and I am not having a problem with swelling. If I thought there was any possiblility that any cancer could be left, I would go for the surgery. My case is very rare, eventhough I am well done now :) Cancer does not cross the midline of the upper lip to the opposite side of the neck, but it did on me. Happy to be alive and kicking, return to work after Thanksgiving, just hope I have enough moisture (spit) to be able to read a story to my little kiddo's. I will have my water bottle and aquaphor handy.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Not Always After
    I'm not sure how the decision is made....

    I do know that some have the neck dissection even before the chemo or rads sessions. It may be a regional/facility thing or some other logic, not sure.

    Myself like others mention here, I only had one lymphnode light up. It was a secondary cancer to the tonsils which were my primary.

    The tonsils were removed upfront, but the lymphnode was left alone pending reaction to the nine weeks of chemo and seven weeks of concurrent chemo/rads. Leaving further surgery as an option depending on the results.

    As the others, my lymphnode completely dissolved after the nine weeks of chemo (CT confirmed this)....

    So I had no further need for additional surgery.

    Best,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #6
    Skiffin16 said:

    Not Always After
    I'm not sure how the decision is made....

    I do know that some have the neck dissection even before the chemo or rads sessions. It may be a regional/facility thing or some other logic, not sure.

    Myself like others mention here, I only had one lymphnode light up. It was a secondary cancer to the tonsils which were my primary.

    The tonsils were removed upfront, but the lymphnode was left alone pending reaction to the nine weeks of chemo and seven weeks of concurrent chemo/rads. Leaving further surgery as an option depending on the results.

    As the others, my lymphnode completely dissolved after the nine weeks of chemo (CT confirmed this)....

    So I had no further need for additional surgery.

    Best,
    John

    They don't decide
    You make that decision based on your analysis of the possibility of recurrence based on their expert recommendation considering any additional information you have accumulated. This is also a great time for a second opinion in either direction. The type of dissection required will give you some insight to the level of possible side effect/complications. FYI generally speaking this is the most tolerable of all the treatment options vs. chemo or radiation. I have minimal discomfort although some here are different. This should not be part of your original decision making input. It really just comes down to your level of risk tolerance. Are you a conservative investor?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    Roger
    I can honestly say that my radical neck was not a big deal. It didnt produce much in the way of long-term side effects, except heartburn. Strange symptom, but definitely related. I've had this since the day after the surgery, but it is easily controlable with the stanard mediccations.
  • Goalie
    Goalie Member Posts: 184
    #8
    longtermsurvivor said:

    Roger
    I can honestly say that my radical neck was not a big deal. It didnt produce much in the way of long-term side effects, except heartburn. Strange symptom, but definitely related. I've had this since the day after the surgery, but it is easily controlable with the stanard mediccations.

    not much effect left
    Yeah, mine was not bad and very little cutting, just took the 26 lymph nodes out. If the mass had disappeared he probably wouldn't have bothered but there was still a significant mass of (dead) tissue.

    Tubes out in less than a week, stitches a little longer. He left them in an extra week because I had been irradiated and the flesh is not as strong.

    The usual numbness from ear to chin and stiff neck for a while. But played hockey a week later. Doctor also removed what little common sense I had left, as you can see.

    Nowadays, only problems are lymphedema causing a wattle, and soreness in the neck that makes sit-ups and some pre-game stretches uncomfortable. Entirely manageable and worth it to have been able to have confirming biopsies on all the little buggers.

    Doug
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #9
    Yours
    It will be your choice weather to have it or not after the doctor shares his thoughts.

    Mine told me after the scan is they seen a hot spot. It could be cancer or it could be scar tissue. For me this was easy. We went thru hell to kick it and having any doubt said to me I was aggressive with the others treatments lets keep it going and go after it. I thought if it was cancer it might spread even after treatments and did not want to give it any time to do the strange things cancer does. So I said lets do it.

    Me me the surgery was almost nothing compared to the 4 plus months of hell with treatment, recovery and waiting until the scan. Surgery pain was controllable by drugs fare easier than the treatment.

    Long term the only problem from surgery I can figure out is being able to raise my arm up over head fully extended moving it slowly up. If I move it with momentum quickly I can get it up almost fully extended.

    Keep in mind the radiation continues to work for 6-9 weeks after last treatment so the final treatment is not the finished attack on cancer.

    Side effects is that and you can deal with those in your new normal, cancer showing up down the road again is much harder to take care of.

    good luck
    johnvg
  • ratface
    ratface Member Posts: 1,337 Member
    #10
    fisrpotpe said:

    Yours
    It will be your choice weather to have it or not after the doctor shares his thoughts.

    Mine told me after the scan is they seen a hot spot. It could be cancer or it could be scar tissue. For me this was easy. We went thru hell to kick it and having any doubt said to me I was aggressive with the others treatments lets keep it going and go after it. I thought if it was cancer it might spread even after treatments and did not want to give it any time to do the strange things cancer does. So I said lets do it.

    Me me the surgery was almost nothing compared to the 4 plus months of hell with treatment, recovery and waiting until the scan. Surgery pain was controllable by drugs fare easier than the treatment.

    Long term the only problem from surgery I can figure out is being able to raise my arm up over head fully extended moving it slowly up. If I move it with momentum quickly I can get it up almost fully extended.

    Keep in mind the radiation continues to work for 6-9 weeks after last treatment so the final treatment is not the finished attack on cancer.

    Side effects is that and you can deal with those in your new normal, cancer showing up down the road again is much harder to take care of.

    good luck
    johnvg

    Canadian second opinions
    Roger, can you seek a second opinion under your medical system? Just wondering how that works with your system. Our system is headed toward major changes and was just curious?
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Roger

    I never did the neck dissections, after my Chemo and radiation the doctor told me it looks to be just scar tissue there now. There is still a little lump there were it was but it does not bother me anymore and I get no pain from it, wow something that does not give me pain. It will be 7 years this coming March 2012, so I think it depends on the doctor and his treatment style.

    Wishing you the best
    Hondo
  • RogerRN43
    RogerRN43 Member Posts: 185
    #12
    ratface said:

    Canadian second opinions
    Roger, can you seek a second opinion under your medical system? Just wondering how that works with your system. Our system is headed toward major changes and was just curious?

    Second opinions as far as I know...
    Where I live, all specialists require referrals from other doctors, one can't call for an appt without one. And similar specialists in one city work together usually in the same hospital clinic so they tend to consult and agree with one another.
    I suppose one way would be to get a referral from the current ENT to another in a different city, however, the appt would take a lot of time to get and not worth it.
    I did email another ENT who specializes in SCC in another city and he was kind enough to reply, given my conditions, he would do exactly the same treatment of chemorad, then neck dissection if warranted.

    My ENT is a renown surgeon in the city, he has a cancer clinic day on Fridays. When I was assessed, there was a team there but the major players would have been him and my radiation oncologist. They couldn't find the primary using the flexible scope. The RO suspected my left tonsil so they scheduled a L tonsillectomy and multiple endoscopies, no neck dissection.

    I'm optimistic because the node began shrinking earlier than my RO expected, and hopefully it's gone or whatever is left is scar tissue once rad wears off.
  • Patti678
    Patti678 Member Posts: 55
    #13
    if you can, avoid the dissection
    I had a modified radical neck dissection due to cancer in lymph nodes as a result of cancer in my thyroid. If I had the option not to do it and still be able to rid the cancer from my body, I would not do it.

    For me the experience has been very hard because of the amount of pain and immobility as a result of damage to my trapezius muscle from the severing of the spinal accessory nerve. I am only 11 weeks post-op and although the healing is progressing rapidly, it is still such an intense amount of pain for me that if given the choice, I would not do it.

    It affected my speech, my swallowing, my ability to use my left arm. My pupil won't dialate and my eyelid is swollen. My jaw, head, and ear are numb. My shoulder blade and rotater cuff are completely rigid and in constant pain. My "sterno" muscle looks like the Hulk it is so rigid. I can not straighten my left arm when I reach straight out to my left.

    Yes, all of these things are improving and my guess is that a few months from now I'll be much better. I'm just saying there have been some very dark days for me and I would not wish this on my worst enemy. So if you ask should you avoid the surgery, my answer is YES as along as you can rid yourself of the cancer.
  • rob1233
    rob1233 Member Posts: 3
    #14
    i had same question
    i had no surgery other than my tonsils removed before treatment and i wondered the same.i had a t2n2m0.when i went in for my first scan dr. daid cancer gone.i never had any surgery, but i was worried i might.so i hope this helps and i hope you willnot need surgery.from what i understand most surgery done before treatment.if not done at this time usualy will not be needed. rob
  • DrMary
    DrMary Member Posts: 531 Member
    #15
    Such a judgement call
    Doug's secondary tumor in his neck lymph node did not disappear, so I think the surgeon was justified in wanting to go take it, and the nearby lymph nodes, out. He took the primary, in the tonsil, out before chemo/rad but wanted to wait and see about the dissection.

    The question comes down to deciding just how certain you want to be about the effectiveness of treatment. When Doug's lymph tumor stopped shrinking, the doctors worried (especially since he reacted so strongly both to chem and rad and lost 45 lbs - further treatment would have been rough). Doing the modified dissection to determine that the lymph was very dead and that the surround nodes had never even seen cancer was reassuring. I do wish he'd not had to undergo the surgery but it's better to be safe than sorry.

    His surgeon was certain that he'd be able to take the affected node and surrounding nodes without causing substantial damage, so he didn't see why we were even worried. He's arrogant, as all surgeons are, but the arrogance is justified and he's such a nice guy otherwise. Doug still has some lymphodema and his nerves are still recovering - he'd have been better off without the dissection, but worse off if we'd skipped it and the cancer was not dead.

    If the surgeon is proposing radical dissection and cutting nerves or muscles, I'd consider a second opinion, especially if the lymph node seemed to respond well to treatment. Otherwise, I'd say it's probably worth it to make sure the treatment was effective - until they come up with a better way, it's the only thing you can do to make sure.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #16
    rob1233 said:

    i had same question
    i had no surgery other than my tonsils removed before treatment and i wondered the same.i had a t2n2m0.when i went in for my first scan dr. daid cancer gone.i never had any surgery, but i was worried i might.so i hope this helps and i hope you willnot need surgery.from what i understand most surgery done before treatment.if not done at this time usualy will not be needed. rob

    Hi rob
    Welcome to CSN sorry to hear you have this stuff but you found the right place for help.

    Hondo
  • RogerRN43
    RogerRN43 Member Posts: 185
    #17
    Lymph node really shrinking
    It has really shrunk, flattened out to a peanut size, and at this rate, I hope it dissolves to gone, fingers crossed.

    11 rads left, 1 Cisplatin dose, and I guess at least a month the rad remains active.

    If not, and neck dissection is warranted, I'll cross that road when it comes.
  • vsudd
    vsudd Member Posts: 52
    #18
    How do they decide
    In my husbands case he did the chemo and radiation and was clear for about 21/2 years but it came back and they had given all the radiation they could in that area so they did the neck dissection. It has been difficult but it saved his life. He has been cancer free so far. The surgery was in 2010.

    vsudd

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