Why did you have a neck Dissection?

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RE: Why did you have a neck Dissection?

by carrie1974 on Thu Apr 30, 2015 04:23 PM

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On Apr 11, 2011 5:42 AM Georgenone wrote:

On Mar 28, 2011 3:03 AM Slowlane wrote:

I had mine done (radical) in Jun 2010.  I had it done because I was told that it had to be done to carve out a tumor.  Well, once they started carving they just couldent quit.  They just kept finding more and more cancerous junk in there wrapped around my jugular and the muscle I cant spell or pronounce and lots of lymph nodes of course.  I have learned to ignore the pain but really get hot about not being able to use my right arm but, thats a payment on life.  If I were you I would be mad too.  Now it gets down to the point of where you are thinking that the surgeon was trying to make a car payment or he just got in over his head.  These thoughts are destructive but not preventable and I doubt you will ever find out exactly what happened.  Now I'm starting to ramble - I guess what I'm trying to say is I feel for you and am qualified to do so.  I pray that everybody did the best that they could and you can't ask for more than that.  Slowlane

There are many good replies. I'd like to answer them all but sometimes when I try the anger gets in the way.

"once they started carving they just couldent quit. "  That’s much the way I feel about it. However, they were not finding more cancer in my neck. The jugular and muscle were just done away with.  They removed the larynx and just kept cutting. Why? There was no cancer there. You have to try to believe it was done for all the right reasons but unanswered questions prevent that. Just for the sake of argument lets say there was some unknown reason for removing the larynx. But since there was no cancer, why did they cut out so much that use of a speech device is not possible?

"These thoughts are destructive but not preventable and I doubt you will ever find out exactly what happened."  Here I received a view of my doctor that I hope the rest of you never get.  My final appointment. UNMC Med Center. Interns always accompany doctors. One of them questioned the laryngectomy where the diagnosis was base of tongue. Doctor said he took it out because he was afraid he would have to go back and remove it anyway in another 3 or 4 months. To me that sounds like he expected the cancer to continue to grow. It also means he gave me a line of crap. I was told the laryngectomy was because I had radiation 10 years earlier and the larynx had to be removed if I wanted radiation treatments after surgery. No matter how you view the surgery, he lied to me about what I needed.

My main objective these days is to learn as much as possible so that I can try to be better prepared for the next round. I've heard the your cured line before!

George

 

George, I am so sorry for your experience.  Just so sorry.  

Carrie 

RE: Why did you have a neck Dissection?

by Slowlane on Thu Apr 30, 2015 08:05 PM

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What do you mean you have heard my "Cured" line before???

Slowlane

RE: Why did you have a neck Dissection?

by JohnnyO on Sat May 02, 2015 09:08 PM

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The decision wasn't mine to have a neck dissection; it was my surgeon's.  Apparently there is a lot of aggressive competition in medical school, and the most aggressive docs become aggressive neck surgeons, always looking to operate.  Talk about cut-throat.

RE: Why did you have a neck Dissection?

by Sdurnell on Wed May 06, 2015 03:52 AM

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George,

So sorry you had what sounds like such a terrible experience with your treatment.

My surgery (modified radical neck dissection) was because the fine-needle aspiration biopsy came back indefinite.  It was cancer, but not definitive as to what type.  

So I needed the dissection in order to get a correct diagnosis.  

The 20 or so nodes removed were sent to pathology and only the one enlarged one was shown to be cancerous, and that one was encapsulated.  Important information when staging and designing a plan to treat.

So the surgery itself removed all discernible trace of my cancer, but I had radiation to prevent a recurrance or in the event that the primary was too small to show on PET.

I had no primary cancer ever found, so only had radiation.  I have never taken pain meds for my surgery.  My neck is stiff but that's about the only problem with it.  Just had an ultrasound of my carotid arteries and they are fine too.

Some people have neck dissections of one kind or another because their radiation fails to eliminate the tumor(s).  It sounds as if more and more doctors are trying radiation first and doing the surgery afterward only if warranted.  But of course not all doctors agree;  when all you have is a hammer, everything looks like a nail.  ENT/neck surgeons operate to help people.  Oncologists radiate or manage chemo.  If they think their specialty can help, I think they often are biased toward it.

Again, sorry that you have suffered so much due to your treatment.  

All the best,

Susan

RE: Why did you have a neck Dissection?

by Atoms on Thu May 07, 2015 01:42 AM

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You caught my attention when you described cancer undetected, leading to greater problems. I've been enraged about the dentist who gave me a "cancer screening"and declared me clear, not long  before they found Stage 4 SCC. I'm glad to have had a radical right neck dissection. The results painted a clear picture of the extent of the disease, and gave me a secure feeling about recurrence.

The only thing I don't like is that having 1/2 of your neck excavated leaves your head looking like it's balancing on a spindle.

RE: Why did you have a neck Dissection?

by Sdurnell on Sat May 09, 2015 06:44 AM

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Dentists are not the best professionals to diagnose head and neck cancers.  Mine definitely could not have been diagnosed by my dentist, although he might have sent me to a doctor to get something checked out.

One thing I learned during and after my treatment was not to get too worked up over how I looked.  After losing 1/4 of my body weight and having to go around with no teeth nor dentures for the same five months, I decided that it didn't really matter what I looked like.  (Maybe it helped that I was never too concerned about my looks, which were unremarkable until I got sick.)

My sister is 10 years younger than me, but from the time she was 15 people have wondered which of us was older.  As we aged and her hair turned quite gray, she was not as amused as she'd been when she was a teenager.  Well, sonce my cancer treatment, no one has asked us.  So there was a benefit to her!

Susan

RE: Why did you have a neck Dissection?

by Dlynn1210 on Fri May 15, 2015 01:06 PM

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I saw my dentist for extensive work just weeks before being diagnosed with tonsil cancer. He was looking right at the back of my throat for an hour but saw nothing questionable. I later lesrned that my left tonsil took up half of my throat and he said nothing about it! My ENT clearly stated that he should have picked up on it and "I suggest finding a new dentist". I followed her advice. Susan - I chuckled reading your remark about your sister. I have good genes and people often asked if my mom was my older sister but after going through treatment, I must admit my good genes have gone on vacation. My youngest daughter told me a couple of years ago that I took a big hit in my aging judging on before and after treatment. I'm just thankful to be alive and cancer free! Diana

RE: Why did you have a neck Dissection?

by byrer on Mon Jun 03, 2019 03:08 AM

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On Apr 08, 2011 4:24 AM jalind wrote:

On Mar 24, 2011 5:10 AM Georgenone wrote:

 

Is there any cancer patient out there who can really answer this Question?

Neck dissection is an exploratory procedure where Lymph Nodes are removed and examined to see if cancer has spread to the lymph system. Why is this done? If cancer has spread to the lymph nodes there is largely nothing they can do about it. They will tell you all they can do is watch to see where cancer may spread to next. Has anyone ever heard of any possible benefit from a neck dissection?

What could possibly make a neck dissection worth a guaranteed lifetime of pain and other problems?

I have read thousands of pages of information on neck dissection. What am I missing?

Neck dissection and a host of pathology reports failed to detect the cancer in my jaw. It was actively causing a horrible amount of pain both before and after surgery. Perhaps my point of view is too narrow to understand. What I see is they butchered my neck took out my tongue and larnyx but never touched or found the cancer causing the problem that prompted me to seek medical help.

So does anyone have some answers?

All lines of wisdom, witt or just plain *hit are welcome. After 3 and a half years of searching for an answer,  even a good laugh would be nice.

[Play ELO's "I'm Alive" in background while reading this.]

A neck dissection really should NOT be an exploratory procedure . . . not if PET/CT scans and FNA biopsies can be used to determine what is going on first so that the radical neck dissection can be planned properly! I can understand why there might be some circumstance that would preclude FNA biopsies, but even so, a CT or PET/CT should still be done beforehand.

For me, the radical neck dissection was done to remove some lymph nodes that were already KNOWN to be cancerous, plus a parotid gland they were on top of, and most of the rest of the string of nodes just to be sure we got it ALL.  As it turned out, that was a wise move as there were more nodes involved than we knew about.  For me, the overkill was a Good Thing.  Radical neck dissections are NOT simple, they take hours to perform, and there is risk of significant nerve damage with quite morbid consequences in the process.  You DO NOT want to have to go back in with a "do-over" to get more tissue, nodes and/or glands.

The side effects from nearly all neck dissections are nothing compared to the morbid side effects of head/neck radiotherapy, some of which continue appearing for months and years afterward.  For me, the question would be what made radiotherapy worth its side effects, some of which will be permanent (not the surgery)?  The answer: it's better than pushing up daisies, which I'd almost certainly be doing by now, or be in palliative care and hospice doing daisy pushup planning.

Your point of view is definately not too narrow too understand. I wish I knew what I know now. I would have definately went to a specialized cancer hospital instead of being shuffled to a local general surgery clinic. No scans were done beforehand. I have had the proceedure & 3 yrs. later I still have problems of inflammation, lymphodema & severe anemia. They do a blood test every 6 mo. My advice to anyone at this point is to always seek a second opinion.

RE: Why did you have a neck Dissection?

by jalind on Tue Jun 04, 2019 12:23 PM

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On Jun 03, 2019 3:08 AM byrer wrote:

On Apr 08, 2011 4:24 AM jalind wrote:

On Mar 24, 2011 5:10 AM Georgenone wrote:

 

Is there any cancer patient out there who can really answer this Question?

Neck dissection is an exploratory procedure where Lymph Nodes are removed and examined to see if cancer has spread to the lymph system. Why is this done? If cancer has spread to the lymph nodes there is largely nothing they can do about it. They will tell you all they can do is watch to see where cancer may spread to next. Has anyone ever heard of any possible benefit from a neck dissection?

What could possibly make a neck dissection worth a guaranteed lifetime of pain and other problems?

I have read thousands of pages of information on neck dissection. What am I missing?

Neck dissection and a host of pathology reports failed to detect the cancer in my jaw. It was actively causing a horrible amount of pain both before and after surgery. Perhaps my point of view is too narrow to understand. What I see is they butchered my neck took out my tongue and larnyx but never touched or found the cancer causing the problem that prompted me to seek medical help.

So does anyone have some answers?

All lines of wisdom, witt or just plain *hit are welcome. After 3 and a half years of searching for an answer,  even a good laugh would be nice.

[Play ELO's "I'm Alive" in background while reading this.]

A neck dissection really should NOT be an exploratory procedure . . . not if PET/CT scans and FNA biopsies can be used to determine what is going on first so that the radical neck dissection can be planned properly! I can understand why there might be some circumstance that would preclude FNA biopsies, but even so, a CT or PET/CT should still be done beforehand.

For me, the radical neck dissection was done to remove some lymph nodes that were already KNOWN to be cancerous, plus a parotid gland they were on top of, and most of the rest of the string of nodes just to be sure we got it ALL.  As it turned out, that was a wise move as there were more nodes involved than we knew about.  For me, the overkill was a Good Thing.  Radical neck dissections are NOT simple, they take hours to perform, and there is risk of significant nerve damage with quite morbid consequences in the process.  You DO NOT want to have to go back in with a "do-over" to get more tissue, nodes and/or glands.

The side effects from nearly all neck dissections are nothing compared to the morbid side effects of head/neck radiotherapy, some of which continue appearing for months and years afterward.  For me, the question would be what made radiotherapy worth its side effects, some of which will be permanent (not the surgery)?  The answer: it's better than pushing up daisies, which I'd almost certainly be doing by now, or be in palliative care and hospice doing daisy pushup planning.

Your point of view is definately not too narrow too understand. I wish I knew what I know now. I would have definately went to a specialized cancer hospital instead of being shuffled to a local general surgery clinic. No scans were done beforehand. I have had the proceedure & 3 yrs. later I still have problems of inflammation, lymphodema & severe anemia. They do a blood test every 6 mo. My advice to anyone at this point is to always seek a second opinion.

Nine years later I'm still coping with the morbid effects of surgery and six weeks of head/neck radiation, and will be for the rest of my life. Some of them are a combination of the two as I'm missing 16 lymph nodes, and a parotid (salivation gland).

* Lymphedema - in my lower limbs of all places
* Xerostomia - not just the missign parotid but radiation effects on other salivation glands.
* Fibrosis - combination of surgery and radiation generating heavy scar tissue that starts to affect range of head motion if it's not exercised
* Hearing - consequential effect of radiation on the inner ear and fibrosis constricting the eusachian tube
* Hypothyroidism - thyroid called it quits about three years after radiation, an expected effect of head/neck radiation that doesn't present itself for 3-8 years.

Whatever those are, it's still better than the painful agony of late stage terminal cancer and looking at the dirt side of the sod, having watched my father's long ordeal with it. My best advice is to get yourself into good physical condition and weight, within the limits of other medical considerations. Physical conditioning takes time - many months - but the effects of becoming physically active are more immediate. It will help with the lymphedema by helping move lymph fluid. If you also had radiation, the blood tests should include TSH level to see if it's starting to go high - an indicator of the thyroid no longer functioning. The sedentary and obese have a much tougher time than the physically active that aren't carrying around excess weight.

Best wishes for you going forward.
John

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