Hi everyone:
I am writing this because I have a decision to make and need some input to assist with it. As background, I was diagnosed with stage IV neck cancer in October, 2003. Unknown primary, 2Na node tumor (3.5cm), no other known sites. I had 35 radiation treatments with 3 chemo treatments (criplatin)to reduce the size of the node tumor. Neck disection was anticipated from the beginning with low possibility of avoiding it if rad/chemo did exceptional job. They didn't, so I am going into surgery 4/22/04. Oh, forgot to mention that on 11/19/03 had tonsilectomy which discovered primary site in right tonsil.

Decision is: how many lymph nodes to remove during surgery? Given location of primary, node II being the one the cancer traveled to, and the potential risk of permanent injury to right shoulder if nerve is damaged, the choice is to remove nodes 1 - 4 (anterior nodes) or also remove 5 (posterior node) which is the one that could result in shoulder injury. Does anyone have any experience along these lines? Care to comment? Thanks for your consideration.

My husband had an unknown primary with metastasis to the neck. They think his primary was his tonsil as well. Let the surgeon decide on what nodes need to be removed. A radical neck is not the end of the world....you will be fine. Be positive! Hope this helps.

Hi Kirk, I'm new here, Fact is this is my first posting (lucky you). But I agree with "wtnwmn" in letting the doctors decide which and how many nodes to remove. I had a partial dissection on the left side and things are Okay. Just have to get used to the stiffy feel, lack of feeling and a numb ear lobe is all. But you'll be fine. Right now your saying "numb ear lobe!!" but it isn't anything, my first reaction was to ask if I could still dcuba dive and the answer was yes. So give it to the doctors and let them do what they need to do.. Good luck

Kirk, I've had 2 partial neck dissections, one the doc took out 30 somthing nodes, the other 2o something nodes.

The first dissection they also used some muscle to rebuild the tongue after the glossectomy, so they got into the traps muscle/nerve some.

About all the side effects I have at this point is some numbness, on one side from my ear to jaw line down to mid chest, other side ear to jaw to collarbone, and some stiffness. When the TSA screeners at the airport do the hands out to your sides deal mine don't go too far out.

Otherwise, one year out from second surgery I can do about everything I could before, except whistle. You get used to it.
Bob

Kirk,
Dan had modified neck dissections both sides end of last July (few nodes taken on each side, obviously not enough), then a left radical neck dissection Christmas eve. He has some numbness and some trouble sleeping on that side, but he is just 6 weeks post 8 weeks of chemo/rad. He really doesn't have much trouble and they say they took pretty much everything from the neck they could because he had such as aggressive tumor. If things go well in the near future, he will probably try a little physical therapy...they say that helps, too.
Have a good one!
Debbie

Hey Kirk!! GET the cancer! I had full right neck dissection, 2/26/04 - 17 nodes removed & have some of the shoulder problems you describe. My shoulder is dropped & tilted forward, but it is getting better & I do expect full recovery with PT & some good old fashioned effort. Really not so bad in the big picture. Definately have the numb ear lobe, but it does seem to be getting better slowly. My big thing is I can't wait to get this damn PEG tube, & PIC line out so I can be fully functional again. I am NOT a couch potato & would love to have all my physical limitations gone so I can just be me, a big strong guy who loves to do construction, home repair of all phases & anything else I put my mind to!! Been self employed for 12 yrs. doing car audio, car security, mobile video, home theater; just about anything to do with 12 volt stuff or audio/video for the home or car. My minds eye sees the future ahead of radiation treatment, chemo & the like. I'm at the end of 2nd week of treatment, 4 to go. The nausea sucks, end of discussion. Still eating orally, but I can feel things changing in throat. Still maintaining weight so far, may have to switch to peg, hate the formula. Sorry to ramble I guess I'm doing some mind clearing. Kirk, make informed decisions & have no regrets. Get on with things. Keep yer chin up bub!

Kirk, I am two years out from a modified radical neck with some additional surgery. I believe there were at least 20 nodes removed. My shoulder on that side is slightly dropped but I have regained full range of motion and complete pre-surgical strength. The numbness has receded to a place where I think it will stay, and that is kind of partially numb. I can feel, just not as accutely as on the other side. This is in no way an impedement to anything I do, and I just don't think about it as it is what we call "new normal." I second Erik's post in that you should worry first about the cancer, and then about your shoulder.

Note to Erik: Great attitude to look beyond! Ramble all you want. As you get farther along, there may be some tricks to cope that we who have been there can share to help you.

Kirk, Iam 3 years out they remove 5 nodes no problems at all. Stage 4 tongue 3 nodes positive.

Hi Kirk,

I think you have everyone confused(or maybe I'm confused) . I believe what you are calling nodes are actually areas of the neck( I don't rememebr the technical term), each contining many nodes. For a neck dissection, the neck is divided in 5 areas. I have had two neck dissections 4 years apart. The first for an unknown primary, with mets to one lypmh node in area III, the took all the nodes from area 1-4. The second one for cancer of rhe larynx with no mets to the neck, they did areas 2-5. Area I contains your submandibile saliva glands, Try to keep those if you can. Let them take the nodes, but try the keep the glands. Area V as you stated if the one that can cause shoulder damage. I have none. My 2-5 side has no problems. My 1-4 side is stiff, can't rotate head as well, right arm does not go all the way up.

Two different surgeons did these surgeries plus I had dental surgery right after the 1-4 neck dissection which I think may have had an adverse effect on my first neck dissection. Both surgeons extremely competent, but the second does this stuff in his sleep(major cancer center) and the first only occasionally. I'd fight for my salivia glands unless he thinks that is unwise. I'd also make certain that this surgeon does this stuff all the time. I told my second one - 'I don't do scars, stitches not clamps', and he did a beautiful job. I didn't even need any PT after that one.

I'm surprised they are giving you a choice. Are you at a major center? Are you going to also have radiation? I think they also can do a modified area V that does not involve the shoulder muscle. I think that is what I had.

Good luck,

Eileen

I guess I was having trouble following this one as well. I had 30 nodes removed in a modified and have no physical impaiments. My neck, althought thinner from weight loss, looks as it did before. The radicals I have heard about involved the removal of something like 70+ nodes, as well as muscle loss. I did not have a choice but mine was done before radiation.

Glenn