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Radical Neck Dissection

Artray
Posts: 24
Joined: May 2009

Hello, everyone, I keep missing so much time in checking the boards!
Today we went to the ENT's for prognosis after the second round of F&A's and another CT scan 10 days ago and although we knew they'd want to do surgery I was sure they'd only do a 'selective' neck dissection cuz through all the conversations with all the docs for the past year the knot on my husband's neck was never anything they could identify and they kept passing it up as not involved, or they didn't think it was involved or whatever...they just never addressed it as being important.
Today the Dr's said that although the SCC on base of tongue is gone (YEAH! after 35 radiation treatments and 3 sessions of Cisplatin/chemo which ended 2/22) there is still cancer in the neck, left side and the mass (which is the knot he's been complaining about for years!) shows cancer and they're going to do a radical neck dissection in about a week.
I WAS FLOORED! So, I've been reading up on it and I know some of you have had surgery before or after the radiation/chemo and want to know what the experiences are out there, although I do recognize that every person is different...just for info's sake!
I can honestly say that when we began the radiation/chemo I had no idea what to expect so I wasn't really worried (of course I also wasn't on this board yet!) but now...I've had such a positive outlook every step of the way and this surgery really scares me...
Your thoughts are appreciated!

Jeani

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I had half of my tongue replaced along with the radical neck dissection (right side) so it is probably comparing apples to oranges, but just for info's sake: following a 15 hour surgery (they replaced half of tongue with muscle and nerves from left arm, complicating things a bit) in which they split the bottom half of my face wide open, they then left me in an induced coma for four days. This was, I am sure, largely to keep me from trying to yak while the tongue was healing.

I then spent another couple of weeks in the hospital. I received a feeding tube while in surgery, incidentally, and your hub can probably expect one of these if he does not already have one.

I received a fentanyl patch for wear at home after leaving the hospital, and probably wore this for another week or two (morphine in a patch, or something similar).

I had access to a speech therapist, a physical therapist (for tongue and jaw movement exercises), and a nutritionist.

Not sure this will help much, as I would expect your husband's case to be quite a bit less severe since they are not fooling with the tongue too. That is not to say it will be a cakewalk, not by any means. All I can say is that when once I asked the young doc (still on training wheels, he was) if a certain procedure was going to hurt (staple removal...hub will probably have a bunch of them) the doc said, "We are not here to cause you pain but to alleviate it." A beautiful answer...and he was right! I hope that your hub's docs are every bit as kind and skilled.

In any case, congratulations to hub for getting rid of the tongue SCC, and best wishes for the next phase.

Take care,

Joe

Artray
Posts: 24
Joined: May 2009

Thanks for the reply. He has the feeding tube installed before he had the raditation/chemo so that's in place. And I don't know if they can use staples since he's had radiation the neck area is not as strong as needed for that type of closure.
They told us that he'll only be in the hospital for 3-4 days til the drain can be removed and he's not very fond of pain meds so that shouldn't be a problem (they tried a patch when he was going thru chemo and he became a zombie for 2 days and insisted they take it off)

My concern is how important the scm muscle is in the future. As he's left sided and this is on the left side will he be seriously impaired from future activity or can it be compensated for? I was going to research physical therapy to find out how this impacts future use of the left side...I feel confident that this surgery will get the rest of the cancer (just gotta know that) and want to know where we go from there to be prepared!

Thanks again,
Jeani

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soccerfreaks
Posts: 2801
Joined: Sep 2006

Jeani,

I am familiar with the notion that tissue will be weakened by radiation. This is why I had the surgery first.

I would advise re pain management that your hub tolerate what he can, but that he not overlook the benefits of carefully planned pain management. It is typically pain, prolonged pain, that discourages us from moving forward as we must. I am not addicted to anything as a result of taking the prescribed drugs. Instead, I can honestly say that it was not unbearable at all, the surgery anyway :).

As for your primary concern, I had the surgery I describe above, and as a right-handed person who had the dissection on the right side of the neck, I have no impairment resultant from that surgery. If there is one issue I contend with, and there is, it is the effect on my throat (esophagus) of the combination of surgery and radiation: it appears that dilation will not be an effective method for enlarging what has become a rather small entry point there, and so my eating habits have changed.

In and of itself the surgery has not impacted me in a negative way. Most people remark that they have to look really closely even to notice the scars, although, yes, I have a slur that crops up on occasion. But that is okay, because it makes the ladies think they can take advantage of me, so I let them :).

Just joking.

Since your hub had no modifications to tongue, I would bet that he will not have these issues.

Take care,

Joe

Artray
Posts: 24
Joined: May 2009

you are such a comfort!
When you had the dissection, what did they remove?
I've spent the last hour online looking for info on repercussions and physical therapy with regards to removing the 'sternocleidomastoid muscle' and have found NOTHING! Art's been so lucky because he can open his mouth pretty well and he believes that this knot on his throat is what's pressing on his swallowing and the drs said that after the surgery there won't be any effect to his swallowing (I assume that's meaning no NEGATIVE effect!), or his voice (which is pretty scratchy after all that radiation, anyways!).
As for the scar, it sounds like it'll be quite extensive but that's ok...it's not really important in the grand scale of things!

Jeani

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Jeani, you will not believe this, but your job is harder than your husband's.

As a survivor, I would not trade places with you for a million dollars.

Your husband would hopefully agree. I would rather have it than care for it.

That said, it sounds like all of the news is good, Jeani! I reiterate that you can hardly tell I have scars, despite the extensive surgery done, and I am hopeful that it will not be an issue for your hub either.

I am not familiar with the SCM muscle. I had a boatload of lymph nodes removed instead.

I can't answer your questions about that, Jeani, but I can suggest that you do take care of yourself. You are worried, and you have every right to be. But you can only do so much. This should be your motto from this point on on: To be a good caregiver, I have to take good care of the giver.

Be sure to give yourself some time away from this. It will be good for both of you.

I wish I could answer all of your questions, but I can't. Trust your husband's doctors, trust your husband, and trust yourself.

Again, best wishes to your husband and his family. He is lucky to have you and he must know it.

Now: take a deep breath!

Take care,

Joe

Artray
Posts: 24
Joined: May 2009

Joe, for the lovely sentiments!
I am so lucky that I have a great support group OUTSIDE of my husband to help me thru this!

Question...is there a way for this board to let me know when someone has posted on a thread that I'm interested in? Otherwise, I forget to look and it would be so helpful!

Jeani

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soccerfreaks
Posts: 2801
Joined: Sep 2006

Subscribe Comments for Radical Neck Dissection

Near the top of each top post you should see the above, or something similar, allowing a link to RSS. I have not used it but believe it will send an email to you letting you know when someone has added to a particular post.

Hope this helps.

Take care,

Joe

cooker1986
Posts: 2
Joined: Jul 2009

just read your story and wanted to let you know these boards are great a lot of info from many caring people my hubby had a radical neck dissection in june of 2006 scm muscle removed, right side. he has difficulty turning his head to the right, driving is a challange and simple things like putting on a sweatshirt become more difficult but not impossible stay strongand keep the faith

Lukedog
Posts: 6
Joined: Jul 2009

This is my first time on any message board and came across your reply. On July 20 I am scheduled to have at least half my tongue replaced and and 2 lymph nodes removed. Your reply helped in telling me some things to expect. My doctor advised me the surgery would take at least 6 hours and that I would be in the hospital for 7-10 post recovery period.
I already have a feeding tube and have used it in the past.
I have undergone 39 radiation treatments and 11 chemotherapy treatments, the tumor shrunk, but still need the surgery.
I am trying to remain positive and reading your posts and some of the others I can see there is hope.
Somewhere you said "You have to believe that any decision you make is the right one." This is what I am trying to do now. Remain positive that the surgery will work/help and do what I am told after surgery (rehab) and hope all will be well.
Thanks,
Trying to hang in there,
Chuck

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

My surgery, Chuck, took place in October of 2005. When I say that they removed half of my tongue, I am saying that they removed the RIGHT half of my tongue, rather than the FRONT half. At that time, it was apparently still a rather pioneering thing, although they didn't act like it.

They made me go through a two-week basic training course of sorts (:)), where they weaned me of my vices, so that I would not want a cigarette or beer in the middle of surgery (or so I suspect), while also performing any number of tests to assure I was up for the operation physically. That was two weeks in the hospital, Chuck, after which I was allowed a brief reprieve at home before returning for the actual surgery and two-week recovery time.

At the time, apparently, the conventional replacement vehicle was a slice of skin from the left thigh. This, they took, in case they needed it (my leg, not theirs) but fully intended, instead, to use muscle and tissue AND NERVES from my left arm to get the job done. This they did, with success, running the nerves from my new tongue half and connecting them to something in my shoulder area.

THAT, the nerve part of the deal, was what took so long ago, I surmise.

Anyway, I am rambling.

I am impressed that, if you are having the same work done, they have reduced both the time in surgery and the recovery time so dramatically in such a relatively short period of time. That is an awesome statement about the state of cancer treatment!

I am also impressed with your attitude, Chuck. I am not alone in this joint, as I am sure you have read, in believing that attitude plays a significant role in both our recovery odds and, more importantly, in my opinion, how we choose to live as survivors.

Best wishes with your surgery. You will be in my thoughts.

Take care,

Joe

dianehurley
Posts: 4
Joined: Jul 2009

This is my first time also responding to a message board.My doctor told me to STAY away from
anything on the internet...probably because I would discover how horrible this is!
so after reading jsut a few of these I decided to jump in here,God Bless you with
success on the 20th...but i did'nt even hear anything about replacing half a tongue...omg
I can't sleep,and as you know can't eat much,monday comes ct scans to see how advanced it is
then i have some hard decisions to make,I can't imagine having to LEARN HOW TO SWALLOW,BREATHE TALK and all that other therapy....never mind the pain...are there any victories out there
among you in terms of getting the cancer all out of you?they really want to keep you in
the dark with what you're really looking at.last week when I had the surgical biopsy,it
was torture....my neck swelled up afterwards and I was rushed back into the er dehyrdrated
because I could'nteven swallow water
THANKS.............LIVING IN HOPE BUT WALKING IN DREAD
DIANE

dianehurley
Posts: 4
Joined: Jul 2009

This is my first time also responding to a message board.My doctor told me to STAY away from
anything on the internet...probably because I would discover how horrible this is!
so after reading jsut a few of these I decided to jump in here,God Bless you with
success on the 20th...but i did'nt even hear anything about replacing half a tongue...omg
I can't sleep,and as you know can't eat much,monday comes ct scans to see how advanced it is
then i have some hard decisions to make,I can't imagine having to LEARN HOW TO SWALLOW,BREATHE TALK and all that other therapy....never mind the pain...are there any victories out there
among you in terms of getting the cancer all out of you?they really want to keep you in
the dark with what you're really looking at.last week when I had the surgical biopsy,it
was torture....my neck swelled up afterwards and I was rushed back into the er dehyrdrated
because I could'nteven swallow water
THANKS.............LIVING IN HOPE BUT WALKING IN DREAD
DIANE

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Diane, your doctors have very legitimate reasons to plead with you to stay off of the interenet and we are among them :). Seriously, some of the information you are apt to get from the internet is misleading or downright unfactual. You really need to take even what you read in here with a grain of salt, as we mean well but no two cases are exactly the same. Beyond that, it seems you are already worrying yourself silly over things that may not even be in your future.

As for removal/replacement of the tongue, I was given the option of refusing surgery and going with only the radiation and chemotherapy, but it is my intention to have them remove it along with the horse it rode in on whenever given the chance: I chose the surgery.

As for victories, I consider myself a victory, as I am sure many other respondents here do. At my last two meetings with OncoMan, the last back in April or May, I was pronounced NED (No Evidence of Disease) and both OncoMan and the ENT are smiling when they see me, happy with their work and with my success.

Best wishes with your CAT scan results and, difficult as it is, I know, try not to let the worrying sap you of your energy and your joy of life.

Take care,

Joe

Bloop19
Posts: 2
Joined: Oct 2009

My doctor told me to quit reading the internet too but I can't!! I am having radical neck dissection tomorrow at 8:00 a.m. I am not so scared of the surgery as I am the chemo and radiation following it in six weeks. I sometimes think about refusing the radiation it sounds so terrible. I am told I have a high tolerance for pain but it is the idea of losing teeth and maybe hair and basically being housebound for weeks on end that make me wonder if quality of life is going to be worth it. Right now I have no pain or symptoms that I even have cancer. The dentist found it when I went in for a routine visit. But it has already gone into my lymph nodes so they want to be as aggressive as they can before it spreads all over. I had a PET scan and so far there doesn't appear to be any cancer anywhere besides under my tongue and in my right lymph nodes.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

I understand what you're feeling. You will be surprised how resilient you and your body are. There will be ups and downs (a roller coaster!), but it will be worth it. I had my surgery and chemo/rad over 5 years ago, and I am still here!

Remember the 3 F's.....faith, family and friends. They will get you through.

I'll be rooting for you. And you can see from these posts that others are too!

George

Hondo's picture
Hondo
Posts: 5791
Joined: Apr 2009

You are in the right place my friend; I think George said it best we have all been there, will be praying that all goes well for you.

Bloop19
Posts: 2
Joined: Oct 2009

My neck dissection is over. I was in the hospital from Friday 'til Monday and am home now feeling amazingly well. However, there was more cancer than expected and some extra muscle had to be taken so I now have a completely lopsided mouth. I look like one of those ghosts whose mouth is shaped very strangly.

Thanks for your support. I see the oncologist next and set up my radiation and chemo. I sure hope that I live at least five years to make it worth the trouble. But from what I'm reading it is a small percentage for 5 year survival when you're in stage IV and it is in most of your lymph nodes.

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

I had a radical left neck dissection and tonsillectomy at the same time. I had cancer of the left tonsil and 2 lymph nodes on the left side were compromised.

Anyway, I felt that the tonsillectomy was by far the worst part. I barely noticed my neck with my tonsils (or lack thereof) hurting so much. I do have to work on stretching the neck a lot as the scar tissue wants to make it less flexible. I often stretch it at stop lights, it gives me something to do and makes others wonder what's the matter with "that guy". lol

Good luck on the surgery.

Wayne

Artray
Posts: 24
Joined: May 2009

Which was last Monday...ended up being a full Radical Neck Dissection on the left and they took the SCM, Jugular, Spinal Accessory Nerve AND the hypoglossal nerve (which I was not prepared for!). Art did really good in the hospital and even was able to eat lunch on the third day, which was pot roast and gravy and mashed potatoes and soup, the rest of the time the food they brought was too dry so we just used the Jevity. Now that he's home I'm giving him wide berth to just do the Jevity (especially since we have cases and cases of it!) and also to slowly work his way back into eating, although yesterday he did have a milk shake!
I've been really thrilled to see him be able to move his left arm and even bring it up to shoulder height...now I think everything is really waking up so the discomfort is more prevalent but he is very responsive to extra strength Tylenol so that's all he needs every 4 hours. I'm hoping that he can resume eating soon although the mucus is much thicker and stringier and now the problem is that he can't feel the left side of his tongue and clearing his throat is very difficult.
Lukedog...our thoughts and prayers will be with you next week when you have your surgery. I can't express how comforting it is to have so many others that have been here to just read and hear from!
So now we're, again, on the road to recovery and just to make it more interesting they had some concerns with his heart during surgery so they did an echo on Thurs and now we have to go in for an angiogram...something totally new and unexpected...the challenges just keep on coming! Oh, well...

Jeani

Sepanian
Posts: 7
Joined: Jul 2009

I had posted a thread explaining the story of my father's situation with his oral cancer.

I just recently read about this full radical neck dissection and now come to wonder why the surgeons are claiming this is a more complicated procedure for him than it sounds. They said that the entire tongue, larynx, and the vocal chords need to come out. So how come this cannot be done with just a full radical neck dissection? Now they have talks about removing the torso and lifting the stomach up to his chest but increasing the chances of a heart attack or a stroke after recovery. I'm just confused and you know what Joe, I'm sure you wouldn't trade lives with someone who's the caregiver or a loved one who's suffering from all this because it truly seems like we're suffering more than my father is.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Chris, although the folks here are downplaying, to some degree, the seriousness of the operation and its effects, which is to be admired I suppose, the truth is, as is indicated in Chuck's (lukedog's) post below, that it is actually a rather serious operation, complicated in your dad's case at the very minimum by the number of 'items' they are considering for removal.

As an example, when I later had to go back in for a lobectomy, when the doc said there was a 1% chance that I would not survive the operation, I was astonished. But my wife shrugged it off, telling me (in reference to my earlier tongue replacement/radical neck dissection surgery) "Oh, your chances of dying were a lot greater with the other one."

As I said, I was astonished, but the cardiopulmonologist nodded his head in agreement.

So, Chuck's assumption that echocardiograms and EKGs and stress tests and even EEGs and Brain MRIs are routine procedures prior to this kind of surgery is right on. I had a battery of tests over a two week period in the hospital, many more than once to confirm levels and so forth. Had they been of the opinion that I could not withstand what was for me a 15 hour surgery and its effects, had they discovered metastasis to the brain or other key organs, they would have called it off, and we would have headed straight to radiation and chemo, as simple as that.

Simple, sad, and true.

You know, Chris, that I agree with you completely regarding the onus upon the loving caregiver, the pain and anguish: I would not trade places with my wife or children for the world. I would much rather be the survivor than the caregiver, I say again, and I say it, to be honest with you, selfishly.

I am hopeful that the doctors will decide in your dad's favor.

Take care,

Joe

Lukedog
Posts: 6
Joined: Jul 2009

Jeani and Joe
Thanks for your thoughts.
I had a carotid ultrasound (flow of bllod to bhe brain test) today and tomorrow I have a stress test and echocargiogram scheduled. Since this is a major operation they are concerned that your heart will be able to handle the stress. As my cardiologist said, "you don't want to survive the surgery, but have a heart attack or stroke."
So having cardiac tests done is a necessary precaution and I assume is very normal when major surgery is contemplated.

jack55
Posts: 4
Joined: Jul 2009

On Feb. 13th, 2009, I had a lump removed from my neck, below my right earlobe. 3 stitches. On Feb. 20th I found out it was cancerous. On March 9th I had a radical neck dissection. My ENT removed 47 lymph nodes (networked around the previously removed node) and another suspicious mass from my neck in addition to my right tonsil. My scar extends from below my right ear to underneath my chin and at the midway point branches off and travels down towards my right collarbone (forms a T). 26 staples. My surgeon was great, and the scar has healed very nice, barely noticable from a distant. The thing that really suprised me was the nerve loss. As my doctor explained, with all the node removal, some nerves had to be severed. I can't feel the right side of my neck or my right ear at this point and some of that may come back. Believe me, I have gotten used to it, it doesn't hinder anything I wish to do including golf. After I had healed from that (4 weeks) I underwent 7 weeks of radiation and 7 chemo sessions. A SMALL price to pay to rid myself of cancer. I wish your husband the best. I was back to work (I work construction) 10 days after my dissection.

Artray
Posts: 24
Joined: May 2009

Finally realized I hadn't been here for awhile and feel obligated to 'put my two cents in'!

Joe, did you change your signature???

Well, we're 4 weeks out from the surgery and I must say I'm pretty darn thrilled at my husbands recovery (but don't ask him...it's TERRIBLE!) He has pretty good range of motion in his left arm to lift it up to his shoulders and sometimes over his shoulder and sometimes not. After 2 weeks he would all of a sudden cry out 'OW, OW, OW' when something woke up like his incision site or the ear. I've been really cajoling him to eat as often as he can and I've found that if I cook something here at home he tends to mope about how hard it is but if we go out he'll plough thru it!

So, his speech is really impaired with the loss of the left hypoglossal nerve so I have to ask him to repeat alot. The mucuous is still there although sometimes worse than others. The swallowing gets better or worse as well but he finds that carbonated drinks are the easiest. And although he's easily talked into a milkshake very often, he can't use the straw as he has no 'sucking' power...don't know if that will get better or not?

We're leaving on vacation in 3 weeks (a cruise) so he's on a deadline to start eating regularly...will still bring the jevity with us for maintenance!

Wasn't able to set up my account to notify me of postings to my threads...frustrating to remember to come check but thanks to all of you for the great thoughts and info!
Jeani

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