anyone else have neck dessection (or resection) after chemo & radiation?

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sunshine_64
sunshine_64 Member Posts: 50
in Head and Neck Cancer #1
I was diagnosed with tonsil cancer (right tonsil) with cancer cells found in lymph glands on both sides of the neck (stage 4 advanced). After a 7 1/2 week treatment of daily radiation and weekly chemo (erbitux) ends next week, I will have a 8-12 week waiting period to see how well the treatment worked. As many of you know, the uncertainty is unsettling.

One option they discussed with me (at the beginning) was that I might have some form of neck dessection following treatment to remove remaining cancer cells from the lymph glands. Has anyone had this surgery following radiation and chemo? Do you have to wait 8-12 weeks for tissues to recover before they make this assessment? Do you know what evidence they rely on to make this recommendation?

Thanks!

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  • KTeacher
    KTeacher Member Posts: 1,103
    #2
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    1 year
    1 Year for me. I had mets to neck so neck dissection was 1 year after original cancer and rads. I did heal fine and had more radiation. Never did have a clean PET post first 'c.'
  • ratface
    ratface Member Posts: 1,337 Member
    #3
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    KTeacher said:

    1 year
    1 Year for me. I had mets to neck so neck dissection was 1 year after original cancer and rads. I did heal fine and had more radiation. Never did have a clean PET post first 'c.'

    This may be your toughest decision
    I sought out a neck dissection after chemo and rads and had only lymph node involvement to the left side. I have an obvious strong bias toward using the dissection as a mop up mission. My personal research put the odds at 1 out of 4, (22%) for recurrence without the dissection. I may be the worlds crappiest researcher. You will need a bi-lateral dissection and I think waiting 8 weeks would make healing for you much less painful and worth the wait, even if it's just to gain some strength back. It's a personal risk tolerance decision and a tough one. Good luck and wisdom arriving at whats best for you.
  • sunshine_64
    sunshine_64 Member Posts: 50
    #4
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    KTeacher said:

    1 year
    1 Year for me. I had mets to neck so neck dissection was 1 year after original cancer and rads. I did heal fine and had more radiation. Never did have a clean PET post first 'c.'

    thanks for quick reply: some more question
    Dear KTeacher: Thanks!

    What stage were you originally diagnosed in? Did you have mets on both sides of your neck? I assume that the PET scan results were the main reason they went through with the neck dissection, or were there other considerations?

    Did they consider doing the neck dissection earlier, or do you know if 1 year is usual?
  • sunshine_64
    sunshine_64 Member Posts: 50
    #5
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    KTeacher said:

    1 year
    1 Year for me. I had mets to neck so neck dissection was 1 year after original cancer and rads. I did heal fine and had more radiation. Never did have a clean PET post first 'c.'

    thanks for quick replies--more questions
    I think the 22 % recurrence rate is about right (I have seen 20-30%) but of course it depends on a number of other factors as well.

    What are the downsides of neck dissection, if any? The earlier literature shows a number of problems can occur, but I assume recent procedures avoid some of these--did you have any permanent damage?
  • Pam M
    Pam M Member Posts: 2,196
    #6
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    9 Months
    Stage IV Base of Tongue, two unilateral lymph nodes involved (one big, one just enlarged). Three rounds induction chemo, then seven weeks chemo rads. Docs told me there was a chance I'd need dissection afterward, but a better chance I wouldn't need it.

    First scans after tx were not clean - docs thought "wait and see" approach was best. Second set showed not only had one node tumor survived treatment, it was getting bigger and more active. Docs were surprised. I had my dissection nine months after chemo rads ended.

    Some docs prefer a "preemptive strike" modified radical neck dissection - go ahead and take the nodes, in case there are cancerous cells there that the tests won't pick up yet - then cancerous cells won't have a chance to do more traveling before they're detected. Some docs (mine, included) prefer to avoid the mrdc, because of the issues it may cause. There are some vocal proponents on each side - some say it's stupid to not just go ahead and remove the threat - some say it's crazy to put someone through surgery, dis-figuration (their words, not mine) and nerve and muscle damage that impair your quality of life just to remove lymph nodes that are more often than not NOT cancerous. I don't know if I'd have had the surgery if my scans hadn't shown cancer. My doctors would not have recommended it. A surgeon I spoke with before treatment said the surgery would definitely be part of the treatment. All depends on who you ask.

    Do I have lingering effects from the surgery? You betcha. Am I STILL improving, even after almost a year and a half? Oh, yeah. It's just another "am I doing the right thing?" thing to wonder about.
  • KTeacher
    KTeacher Member Posts: 1,103
    #7
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    sunshine_64 said:

    thanks for quick reply: some more question
    Dear KTeacher: Thanks!

    What stage were you originally diagnosed in? Did you have mets on both sides of your neck? I assume that the PET scan results were the main reason they went through with the neck dissection, or were there other considerations?

    Did they consider doing the neck dissection earlier, or do you know if 1 year is usual?

    Stage 2
    I had a lump removed on inside right upper lip. 1 inch of my lip was removed, 50 stitches. I refer to this surgery as my 'lip lift.' Had radiation but no chemo. As soon as radiation was finished a lymph node on the left side of my neck swelled up. Antibiotics took it down. First PET did have some activity but surgeon didn't seem to concerned (ENT thought I would be getting a neck dissection). Rads were finished in Oct. 2010, by May 2011 I noticed a lump on my neck, left side. It is every rare for 'c' to travel from right upper lip to left neck nodes, that's me. After PET and then needle biopsy dx mets. I wanted the bugger out. July 22nd neck dissection on left side, more radiation (I was able to reuse the mask!). I just had my first clean PET scan in April.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
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    Flip SIde...
    And on the flip side... I was STGIII SCC Tonsils (primary), and a single lymphnode (secondary), all on the right side.

    My ENT also advised to wait on the dissection dependent on results from the three cycles of Cisplatin, Taxotere and 5FU, and the seven weeks of concurrent carboplatin and 35 daily rads.

    One reason being the location of the tumor to the carotoid, and historical results.

    In my case, that so far (three plus years), has been the ticket. The tumor actually dissolved away, not showing on a CT after the second dose of chemo.

    All post treatment scans have been clean, including the first at about 3 months post rads.

    Of course the flip side, if the tumor still was there post treatment, it was coming out...

    Best,
    John
  • Pam M
    Pam M Member Posts: 2,196
    #9
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    sunshine_64 said:

    thanks for quick replies--more questions
    I think the 22 % recurrence rate is about right (I have seen 20-30%) but of course it depends on a number of other factors as well.

    What are the downsides of neck dissection, if any? The earlier literature shows a number of problems can occur, but I assume recent procedures avoid some of these--did you have any permanent damage?

    Permanent Damage?
    I prefer to say long-term issues. Personally, short-term I had some eating issues, great limitations on movement of my neck, shoulder and arm, some eating issues, tightness or firmness in the neck (many liken it to feeling like a noose is around your neck), some numb areas (from top of my arm to shoulder and part of chest, neck, jaw, ear and side of head) some spots in the same areas extra sensitive, facial twitches (nothing BIG) and mouth pulling to one side, lopsided smile, facial asymmetry (I REALLY think the asymmetry is due to rads, not mrnd), "turkey neck" from lymph fluid building up (because you've removed the lymph trolley system, the fluid can't find a way to travel at first), and I'm sure there are other things that I did not experience.

    Almost a year and a half later, I still have physical limitations BUT - I can move my neck from side to side either normally, or very close to it. I can roll my head in a circle without sharp pains now. Turkey neck is a thing of the past - sometimes I'll notice a slight bulge, but it's slight, even to me. I can raise my hand above my head, and use both hands to wash my hair now, but my arm still doesn't "work" at all angles (if, for instance, I'm raising my hand from my side, straight forward, like I'm shaking hands, and on up, I can only make it to the Nazi salute height - I can use my other hand to push my elbow and make the arm go the rest of the way, but can't make the move with just the "bad" arm. My ultra sensitive areas are gone; The numbness is greatly reduced, and gone from some spots. My smile is still lopsided, but I really think people who don't know don't notice. I rarely have facial twitches, and when I do, it's mild. I do normally feel a stiffness and firmness in my neck, but it's improved, as well. And I continue to make progress, so who's to say what's permanent? I'm doing well enough now to be surprised and irritated at some of the ways I'm limited (I reached under a counter at work to plug something in, THEN realized I couldn't make that movement with my arm - oops). Sounds like a lot, I know, but it's not so bad. And like I said, it keeps getting better.
  • ratface
    ratface Member Posts: 1,337 Member
    #10
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    Skiffin16 said:

    Flip SIde...
    And on the flip side... I was STGIII SCC Tonsils (primary), and a single lymphnode (secondary), all on the right side.

    My ENT also advised to wait on the dissection dependent on results from the three cycles of Cisplatin, Taxotere and 5FU, and the seven weeks of concurrent carboplatin and 35 daily rads.

    One reason being the location of the tumor to the carotoid, and historical results.

    In my case, that so far (three plus years), has been the ticket. The tumor actually dissolved away, not showing on a CT after the second dose of chemo.

    All post treatment scans have been clean, including the first at about 3 months post rads.

    Of course the flip side, if the tumor still was there post treatment, it was coming out...

    Best,
    John

    My personal timeline for comparison
    started radiation and chemo in August of 2009 and finished 0n 9-30-2009. Exactly 8 weeks to the day later I was having the neck dissection. Some unrelated information on neck dissections: If you want you can watch one on you-tube. Get a surgeon who has done many of these and insist that the surgeon do the actual cutting and not a student. The very best way to combat the side effects is some form of exercise, yoga has done wonders for me. Tai Chi is also wonderful.

    As a final note, to make your decision even harder, My pathology from removed nodes, after the dissection, came back negative and so it would appear my dissection was in vain and I probably made the wrong decision?
  • jtl
    jtl Member Posts: 456
    #11
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    I believe you have to wait
    I believe you have to wait that long before the PET/CT can produce reliable results. Too early and the PET may give a false positive reading because the radiated areas are still healing.

    Did you have a lymphadenectomy or a needle biopsy of the lymph nodes? Was there a physical tumor (mass)?

    John
  • mls351w
    mls351w Member Posts: 90
    #12
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    jtl said:

    I believe you have to wait
    I believe you have to wait that long before the PET/CT can produce reliable results. Too early and the PET may give a false positive reading because the radiated areas are still healing.

    Did you have a lymphadenectomy or a needle biopsy of the lymph nodes? Was there a physical tumor (mass)?

    John

    surgery
    stg3-4 ssc bot golf bal size lymph node on right side of neck.
    2 weeks of chemo and 8 weeks of radiation. The node went back to "normal".
    Last day of radiation was July 10th. Had a scan after 3 months?. ENT said he was concerned with the lymph node. Nov. 29th, he removed node and 2 on each side. Center node was positive, others were clear. No side effects as far as movement or shoulder/arm issues. Right side of neck is still kinda numb, but the nerves are slowly healing. Surgery was 6 years ago.
    So, my surgery was approx. 4 months after treatment.
  • DrMary
    DrMary Member Posts: 531 Member
    #13
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    Not a "wrong decision"
    Getting the dissection and finding out the cancer is dead in the node does not mean it was the wrong decision; passing on the dissection and finding out the hard way that the node was still active might be considered so.

    Doug (traveling in Brazil, so I'm answering) had his cancer in the right tonsil, first detected by the swollen lymph node. The node shrank with treatment but stopped shrinking near the end, which worried the doctors. The dissection showed the node to be dead inside - just a shell, which is why it stopped shrinking. The effects of the dissection were rough, but Doug feels it was worth it to be certain. The other news that came back from the dissection was that the cancer had not ever spread to any of the surrounding lymph nodes, which gives us hope that we won't ever see it again.

    It's about a year since his dissection - his doctor is very good, and did not have to cut any nerves. Still, he had numbness and weakness from the nerves getting moved around and traumatized - it was a good six months before that faded. We do a vitamin E oil massage about 5 mornings a week - this really helped with the lymphedema and he gets very little swelling there now.

    I'm generally anti-surgery, and it was not fun to have him take a giant step backward in recovering. However, I'm glad he did it.
  • Goalie
    Goalie Member Posts: 184
    #14
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    DrMary said:

    Not a "wrong decision"
    Getting the dissection and finding out the cancer is dead in the node does not mean it was the wrong decision; passing on the dissection and finding out the hard way that the node was still active might be considered so.

    Doug (traveling in Brazil, so I'm answering) had his cancer in the right tonsil, first detected by the swollen lymph node. The node shrank with treatment but stopped shrinking near the end, which worried the doctors. The dissection showed the node to be dead inside - just a shell, which is why it stopped shrinking. The effects of the dissection were rough, but Doug feels it was worth it to be certain. The other news that came back from the dissection was that the cancer had not ever spread to any of the surrounding lymph nodes, which gives us hope that we won't ever see it again.

    It's about a year since his dissection - his doctor is very good, and did not have to cut any nerves. Still, he had numbness and weakness from the nerves getting moved around and traumatized - it was a good six months before that faded. We do a vitamin E oil massage about 5 mornings a week - this really helped with the lymphedema and he gets very little swelling there now.

    I'm generally anti-surgery, and it was not fun to have him take a giant step backward in recovering. However, I'm glad he did it.

    AGREED!
    I agree with my lovely wife - not for the first time, you can be sure. Yes, I am writing from Brasilia.

    The team agreed to do the tonsillectomy right away because this could be done very cleanly and the spread was very well known. They agreed to wait on the dissection until after rads and chemo on the chance that opening up and cutting and such beforehand risked spreading what might be spreadable and that it was better to kill everything possible first (but not me!) and then see if anything had to be cleaned up.

    As it turned out, after treatment I did still have a mass almost like what we started with bulging from my neck/throat and we all felt it was worth going in and cleaning up even though the scans had indicated it was all quiet on the western front.

    As Mary said, everything was either dead or never had it but it was worth being certain and also to get rid of that marble in my neck.

    My surgeon was wonderful and I was back playing hockey a week after the stitches came out which was about a week after the tubes came out. But I am a hockey goalie and a lunatic - but wait, I repeat myself. What I have now a year or more later are really just annoyances, a little stiffness here, a little numbness there. And I do have a neat scar I can point to (otherwise not obvious) when I talk about my cancer.

    You should very carefully consider this and go with what your team thinks. Good luck, Doug

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