UGH Neck Dissection...Perplexed

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RE: UGH Neck Dissection...Perplexed

by JohnnyO on Wed Sep 20, 2017 02:40 PM

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Hey George -

10 years ago is a relatively long time, so I would discourage anyone newly diagnosed to assign too much weight to your experience.  In my experience ( 5 years out), the docs were, of course, primarily interested in getting rid of the cancer, but also were very focused on quality of life afterwards.  So they did a very targeted radiation and, I assume, a "targeted" neck dissection, avoiding things like removal of blood vessels and bone, if possible.  They don't seem to hesitate taking out lymph nodes, though!

I'm sorry that you have to go up against the monster again.  Personally, I'm not sure that I would; I've recently realized that I'm not going to live forever.  Even with the great result that I had from my treatment, there's a lot of mental baggage that comes with it.  

RE: UGH Neck Dissection...Perplexed

by Georgenone on Thu Sep 28, 2017 04:06 AM

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Susan,

I have read many of your posts and they appear informative and tastefully written. Thank you.

Yes arteries were removed. After previous surgery I healed with no major issues but I also had 3 months between surgery and radiation. At that time I told the doctor I wanted healing time prior to radiation. Prior to radiation for first cancer doctors made healing after radiation sound very difficult. The way they talked I was expecting HBOT then. I had a 3rd degree burn on my neck twice the size of a silver dollar but it healed very quickly.

Until last week when the surgeon said he removed arteries I had no idea. That is also a source of irritation because for the past 10 years I have been trying to tell the doctor there has to be a problem with blood flow through the neck. 6 years out of surgery they did an ultrasound and concluded that while I have sufficient blood flow through the neck, flow through the carotids was reduced by 50%. This is mostly due to scar tissue after resectioning the carotids. They have tried to tell me the blood pressure issues were due to blood rushing out of the head. I told them that’s a load of bull. I have felt huge upward surges through my chest that race down my arms then up my neck, which fills with pain and pressure then exploding pain in my head, and everything goes black, loss of vision. I'm no doctor, I may know nothing but I refuse to believe what I feel is blood rushing out of my head.

I don't know any thing about removing bone. There is nothing in my records about it but scraping the bone left 2 sharp pointed bone spurs on the bottom edge of the lower jawbone. The back corner of the jawbone on my left side was cut off. Where you have a rounded corner on back of jawbone below your ear, mine now has a dime size cutout. After surgery there were so many issues to deal with it just seemed like it was too trivial to ask about.

I read where you said (needed the modified radical neck dissection to get definitive diagnosis). That’s probably the best reason I have seen for having a dissection.

   My questioning the necessity of neck dissections is not just because of what they do to people but because the numbers just don't add up. A lot of this stated information is from Pub Med. It has widely been adopted as standard practice in
carcinoma of the larynx T3,  and in hypopharyngeal carcinoma. Of the 600 or so lymph nodes in the body about 200 of them are located in the neck. What I have read 50 to 60 nodes removed during a dissection seems to be an average. For me this is a big question. If the nodes in the neck are so highly to be infected why is it only about 25% of the nodes are removed?

In my current case I have had to learn the hard way that there is another reason for Neck Dissection. The cancer is not well defined. Much of it is not visible in CT and PET scans. Pathology reports confirm cancer. Tomorrow I will be getting a second radical dissection on the left side.

This sure seems like a tough way to learn more about dissections.

Tomorrows menu includes but is not limited to all of the following: Unilateral Radical Neck Dissection, Transhiatal Esophagectomy . Mandiblectomy, Soft Palatectomy and the removal of all remaining tissue at base of tongue.

RE: UGH Neck Dissection...Perplexed

by cagy2 on Thu Sep 28, 2017 03:41 PM

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On May 15, 2017 2:37 AM radiationtonsil wrote:

33 rads  70 greys  1 dose of 40 Chemo Cisplatin (almost killed me)

I refused the surgery because of the negative results I saw in my support groups.

I am glad I did not give in to the repeated pressure to have surgery.  Diagnosis #16 HPV+ Stage 4.  My original survival chances were 40 percent chance to make 12 months ... now the Docs say I probably could live a long time.

Go to a few support groups before you make your decision.

Greg in Chicago

 

Congratulations on surviving.  I had Tongue  cancer (stage 4) in 2010 with your same treatment and again in 2016 I had neck cancer (stage 3) with 34 radiation and FolFast. ( Which They found out that you can't receive radiation with Folfast} so I had to start Chemo over with Different drugs.  No surgery!!!  Seems like every Dr. has their own regimen, so watch out and get 2nd opinions.  Oh, I also had kidney cancer (encapsulated so they waited 3 months to tell me that and removed kidney then)  I questioned that and was told if my tongue cancer wasn't cured then I would have died

RE: UGH Neck Dissection...Perplexed

by Sdurnell on Thu Sep 28, 2017 10:40 PM

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George,

Wishing you the best of luck with your surgery today!  Sorry I didn't seen this earlier so I could tell you before you went under.

Since my cancer was in the lymph node only I was happy for the neck dissection.  They only took out 20 or so nodes, but only one was cancerous, and it was encapsulated in that one.  I have few side effects except a permanent "stiff," but rarely painful, neck.  It's something that's easy to get used to.  I would guess that it depends on how many lymph nodes are affected (or seem to be) and how big they are that might help people decide whether to have surgery or not.  At the time I was diagnosed it was pretty standard, and it seemed logical to me.  I wanted that thing out of there!

My doctors are now not so sure I needed radiation, but I don't regret that either.  It seemed the best option at the time.  I found it kind of interesting that the "virtual" second opinion I got, from an ENT who worked with my sister and reviewed my files and scans, thought I should have chemo too.  My doctor didn't, and so I didn't get it--happily.

My neck "burns" healed fairly quickly too.  I don't think too many people have longstanding issues with that.  I am on baby aspirin per my RO for possible issues with the carotids, but my ultrasound was good.

It seems perhaps you should be seeing someone else about the artery issues.  Not sure I'd trust an oncologist or ENT about that, especially as serious as your symptoms are.

Susan

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