I have an appointment with my ENT Dr on Friday and we will be having a discussion about having a neck dissection to remove some neck nodes. At least that is what he told me last time and at the first visit. He stated that even after the radiation and chemo and a clear PET scan he would probably still recommend the surgery. I've had all that and a clear PET scan ( although after they did the PET scan they said it was too early( 6 weeks), no one seemed to know why it had been scheduled too early). Anyway, its been 3 months post treatment now.
Here is my question. Is it common practice to also have a neck dissection with node removal after treatment.? I had tonsil cancer that went to my neck (5cm tumor) The tumor was too large for surgery pre-treatment. I am extremly reluctant to have the surgery. What side effects have those of you with the surgery had? I am hearing about loss of head and neck movement? I also have heard about a number of people who had tonsil cancer and didn't have the surgery. He said we would talk about having surgery or waiting and seeing if something showed up later. I am thinking I want a second opinion too.

Hi Mica,
I didn't have tonsil cancer but I did have the neck disection. I can only tell you what I would do, in your situation, knowing all I know now. I would DEMAND the neck disection. I have had one, had it 17 months ago. Yes my neck is stiff, but I can turn it the full way to one side and have only slight limitations to the other side. I forget about it during the day, might think about it at night when I'm tired. This cancer is not merciful so do all you can to get it the first time.
Minnie

I was initially reluctant to have the dissection after the radiation treatments appeared to get all the positive nodes in my post radiation scans. I wasn't interested in another damn procedure, more discomfort, and more physical disfigument. None of my docs at MDACC agreed with me. However, after what I had been through the dissection was a walk in the park, and I'm still here without a recurrence almost 6 years out. Range of motion...slightly decreased, most people at first glance don't notice the deficit on that side of my neck, though i was self concious about it for some time. Regrets that I had it done?....None.

Mica, I think your situation is very similar to mine. I had tonsil cancer that was spread to my neck with the largest tumor measuring over 7 cm. Surgery was not a possible option since it would involve an enormous area, too much for me to bear. So I went with the concurrent chemo-radiation treatment to shrink the tumors. At that time my oncologist gave me less than 50% of the chance that the treatment could kill all cancer cells and that surgery could still be very necessary. Thank God after the treatment and with the follow up scans at 2 months post treatment, everything was clear. My team of doctors decided that surgery was not necessary even though I suggested having one in case the evil was hiding somewhere. I was under very close observation by the doctors and had a 3 month interval check up. I just had my annual ultrasound scan last Thursday and MRI yesterday. I have the gut feeling that everything is clear and of course won't be 100% sure until I meet my doctor next week. I will be in remission for 3 years. So far, I am happy that I don't need any surgery. My neck movement is not affected. Of course if your doctor recommends neck dissection, there must be their reason and if I were you, I would trust their decision. I know your dilema because I went through similar situation before when one group of people told me that if I didn't have surgery, the hiding cancer cells cannot be eradicated while the other group said that surgery may be dangerous and can activate cancer cells elsewhere.Any kind of treatment has both pros and cons. It is always good to hear others' experience and opinion before making your own.

Karen.

Hello Mica,

I had a 6mm tumor on my right tonsil thst was poorly differentated. I had a neck disetion 1st.
They split my jaw in the middle of my lower lip down the neck curving over to my right ear. They removed the tumor but some was on the carthoid artery, they left that small amount and said they would target that area with IMRT radiation.

They than had a plastic surgeon reconstruct my throat with my right side chest pech muscle. Another option is to use a section of the underside of your forearm to reconstruct the throat and cover the arm with skin taken from your leg. A much trickery operation than the pech.
I don't know if all neck disectios are like what I had. Someone should post who knows this.
The good thing about the neck disection was after a few days things were tolorable. Not saying it wasn't a serious operation but whatever pain you will have can be (SHOULD) be managed. There wasn't much pain with mine.

One thing I've heard on this forum many times is:
"Throw every thing you've got at this bast__d of a diaease the first time" It is one unforgiving diaease. I truly believe that after traveling that path from DX to end of treatment.
They removed several nodes which all came back clear. My lungs and brain were clear. I was also
in fairly good health.

After 8 weeks had 33 treatments of IMRT radiation. I was lucky and had no side effects at all from the rad. From what I've read this is rare. "BOOM" Your down with treatment
and you and your family are on your own with your family. Thats the main reason this website is as valuable as it is. People have heard me say this many times and I will say it again:
:Who better to ask then who has traveled the path ahead of you:

Thank God I found this website. A place to educate yourself, which empowers you as you
talk with your doctors. Ask alot of questions and write them down ahead of time. We always forget one or two. The members here will offer what we would do under a simalir situation
and why. You have to be the one who makes the decision. There is so much information to gather and so little time. After you have done this go with your gut feeling, It usually never fails you. Don't be afraid of this operation, compared to field radiation and chemo most would op for the neck disecton.

Question for All: Do all neck disection involve splitting of the jaw at middle lower lip and going down either right or left to the ear?

Best of Luck Mica, Your friend Danny Boy!

Mica,
I'm one of those that didn't have a neck disection, even though I had an advanced tonsil cancer. It was presented to me before treatment started that, in my case, the procedure would not have resulted in any great advantage over just radiation and chemo alone. The H&N surgeon and my team thought my odds were actually slightly better without the surgery. They also said that the surgery would result in fairly major quality of life issues for me. Please note that I had no metastesis or node involvement - that may well have changed the whole treatment strategy. I followed the path that I thought would give me the highest chance of survival. If the neck disection would have improved my odds I would have done it. So far at 20 months post Tx I am cancer free. As you can see from these posts, the jury is pretty evenly devided on whether to have a disection or not - it is a decision you will have to make with the guidance and advice from your medical team.

I don't think anyone addressed your original question - yes it is common to radiate and shrink a tumor prior to surgery.

I would get a second opinion just so you can feel comfortable that the path you are taking will afford you with the highest survival possibilities.

Dan,

They split the jaw for access to the tonsil, and to complete the flap reconstruction. The scar down the side of "our" necks is from the dissection.

Mica, in addition to what we have done you need, to a degree, trust your doctor on this one. The neck dissection is nothing compared to the tonsil surgery and the added insurance of a pathology report would be priceless. I had a functional neck dissection with 30 nodes removed and have suffered no real rang of motion issues. My final observation would be that a reoccurrence can also result in some far more serious neck movement problems, go with the most aggressive approach tolerable the first time around!

Good luck,
Glenn

Mica,

I did have a neck dissection; however, my diagnosis was somewhat different from yours. I had tongue cancer (left side) and had both a partial glossectomy and neck dissection before having radiation.

Before doing the procedure, my surgeon explained that, depending on what they found going in, the neck dissection could be somewhere in a range from only moderately invasive to very invasive. In my case, they did not have to split the jaw -- I ended up with a scar that starts right under the center of my chin and runs under the left jaw line to a point back behind my left ear. In the long run, the neck dissection was far less of an issue for me than radiation was. While it did take some time to heal (and there was temporary pain and stiffness), I did get back almost full range of motion in my neck. In fact, many people who did not know me at the time I had cancer, and who subsequently found out about my surgery, have said they were surprised to hear about it, because they wouldn't have guessed it from external appearances. I guess that's the long way around to say that neck dissections aren't all identical.

Cathy

Hey Mica,
Dan had tongue surgery for SCC on his tongue. No rad. needed, however, 3 months later he ended up with an extremely aggressive tumor in his neck. He then had a radical neck dissection on Christmas eve. Doc let him come home on Christmas day. Walk in the park compared to the tongue surgery, chemo and rad. treatments. He has some trouble with range of motion and he goes to a physical therapist for that and it is helping a great deal. I really think P.T. is very important. He had to wait a few months after treatment to get it and it made him more stiff with more problems. I would think that an advantage of having the dissection and rad therapy is that you wouldn't have to wait very long at all before some physical therapy to get the range of motion back. Do all you can do to get the cancer the first time as stated earlier. We didn't know as much as we do now and would have asked for rad treatment immediately after the tongue surgery.
Take care, God bless,
Debbie

Mica,

Hi there just thought I would chime in.

I had tonsil cancer stage IV and one node involved.

I had a selective neck disection. This is where they go in and remove the bad nodes (pluck them out is what my doctor said)and then they break the chain of Lymph drain.

The selective is what you must be talking about. If your doctor is talking about a radical neck disection then you are either sicker then you think, or you need to seek another opinion. Really.......

The selective was a breeze. No pain at all. The do the surgurey and leave a drain in there for a week. Easy to get use to. The scar is put on a fold or wrinkle in your neck. Cant even see mine unless you look hard.

Let me know what I can do to help.

Robert

Sorry hit the wrong button and sent before I was finished. Danny boy, in answer to your question,
There are basically three forms of neck dissection.

Selective Neck Dissection:
These neck dissections (another type of modified neck dissection) are procedures that preserve the sternocleidomastoid muscle, the spinal accessory nerve and the jugular vein and also remove less extensive amounts of lymph nodes and surrounding tissue. The anatomy of the neck is such that individual groups of lymph nodes have been defined (we call these levels although they are not defined by the depth of the lymph node group). There five levels described in the lateral neck and all five levels are removed in radical and modified radical neck dissections. Selective neck dissections remove 2-4 levels of lymph nodes. The type of selective neck dissection (and levels removed) will vary depending on the primary cancer site and the lymph nodes at greatest risk of developing metastases.

2. Modified Radical Neck Dissection:
This term describes a variety of neck dissections that basically refer to anything that is less than a radical neck dissection. For instance, many times a lymph node metastasis may be present, but all of the lymph nodes at risk can be removed without sacrificing the spinal accessory nerve. This is probably the most common modification of neck dissection. Other situations may present themselves when the sternocleidomastoid muscle, jugular vein or even all three structures (muscle, vein and nerve) can be safely preserved.

3. Radical Neck Dissection
This operation has been used for almost 100 years and describes the removal of lateral neck nodes and tissues. Tissue is removed from an area that approaches the midline of the neck in front to the trapezius muscle at the side of the neck. Included in this tissue, which extends from the collarbone (clavicle) inferiorly to the jawbone (mandible) superiorly are dozens of lymph nodes. In addition to lymph nodes, this operation removes the submandibular gland (a salivary gland in the upper neck), the sternocleidomastoid muscle, the jugular vein and the spinal accessory nerve (to the trapezius muscle).

There it is in a nutshell so to speak. Danny, you had Free Form Flap surgery and a MRND is my guess.

Oh and one more thing Dan,

How about those Friggin BEARS!!!!!!!!!!!!!!

Robert

Mica, I had tonsil cancer as well. Initially had a tonsilectomy, then rad/chemo, then modified radical neck dissection. Had a similar week to the one you are having in that I questioned whether the surgery was necessary. Especially given what the doctor said as a possible side effect being loss of use of the right arm. He said that even as a surgeon he would have the surgery and learn to operate left handed. I thought about it for a week and even thought about only removing 4 of the 5 lymph nodes (composed of about 35 lymph glands). What made me decide to have the surgery was imagining how I would feel if I had a recurrance and hadn't had the surgery. I would always wonder if it was due to not having the lymph nodes removed. I wanted to everything I could do to beat the disease and not ever look back and say "If only I had ..." This way, if I have a recurrance, I can always tell myself that I did everything I could do to kill this disease. Consider how you would feel if you don't have the surgery and something happens.

As far as the post op situation, the surgery was no big deal at all. The tonsilectomy was much worse, the rad was the worst, the neck disection and chemo was about the same. I am having some post surgical issues with range of motion of neck and shoulder, am in physical theropy, also, but a small price to pay for the clear conscience of having done all I could do to make sure no recurrance happened. And to get that report of clear pathology report and clear CT scans at first post treatment scan. I would always recommend the surgery, but you have to make that decision. Good luck and I will pray for guidance for you.

Mica,

My primary tumor was at the base of my tongue with metastatis to at least one lymph node on the right side. Since I never had surgery, we'll never know pathologically for sure if there was other node involvement. The reason I'm chiming in here is that when I was originally diagnosed, they called my primary unknown and the ENT wanted to do surgery right away. Had I followed that path, I would have had a radical neck dissection along with post-op radiation. After obtaining a second opinion and finding my primary tumor along the way, my entire treatment plan changed. My advice to you would be get a second opinion if you're not comfortable with your current doctor's treatment plan. Remember surgeons want to cut, radiation oncologiest want to radiate and medical oncologists want to chemo you. I feel I was lucky when I encountered the surgeon at MDACC that didn't want to cut on me. Best of luck and let us know what you decide....and why.

-Brett

Mica. The main body of the web site has a description of the different kinds of neck dissections in it. http://www.oralcancerfoundation.org/facts/neck_dissections.htm To find things like this, use the site map or the search engine in the main web site. The search engine in the message board only searches posts.

Thank you everyone who contributed a response to my concerns. You have given me a lot of information to take with me tomorrow when I have the surgery conversation with my DR.
Mica

Mica -- I know I"m a little late in replying. My husband had mod rad neck dissection Oct 8th and is doing just fine. As the dissection was on the left side and original tumor site is on right, he had double-trouble with eating. He is healing slowly though and other than some issues with remembering to exercise his shoulder to keep stiffness out, he's doing fine. Is also in the middle of continued radiation as the dissection found cancer in nasopharynx. My advice to you, if you haven't already decided with your doctor is, if you have questions or concerns, seek a second opinion. We have done that and always find that we're more comfortable, even if the 2nd or 3rd opinion is the same at least we feel like we're getting the best option. My husband certainly didn't want the dissection but we felt it was a good "preemptive" strike against cancer reoccuring on the other side. Luckily, the biopsies done while getting the dissection did find the cancer in the nasopharynx and in 2 of the lymphnodes that were removed. So, it was a good decision although one never wants to have to make. Please post when you can to let everyone know how you're doing. Millie

I have only just found this site and am quite the newbie, but I am having angst over a radical neck dissection scheduled for the 5th.

I have poorly differentiated squamous cell carcinomo (PDSCC) with an unknown primary. I have a lymph node that is 3cm in size that was biopsied and came back positive for the PDSCC. I have had my tonsils removed and tongue and throat biopsies, but they came back negative, hence the lack of a primary source.

I am an HMO member and the "tumor board" had me meet with a surgical oncologists who informed me that a radical neck dissection is in order. Since then, he has had to opt out of the surgery and I am to meet with an ENT surgeon in the morning (who removed the tonsils and did the biopsies).

I understand the reasoning behind removing the lymph nodes, but there had been discussion that they may be able to save the nerve that would involve my ability to use my right arm. However, they plan to remove the muscle tissue. They also plan to follow up with radiation. I don't understand why they can save some areas of the neck and not the muscle. The only answer I have received is it is their protocal to insure they get all of the cancer even if it isn't present in the muscle. I am tempted to insist they do a modified neck dissection and remove only what they know to be cancerous. They can take all of the lymph nodes on the right side of my neck, but leave the nerves. veins, and muscle tissue alone and follow up with radiation. But, I wonder if they will adhere to my wishes and if I am making a huge mistake.

Thanks for listening.

John Paul,

I'm a newbie here, too, but my radical neck dissection was 2 years ago, so I can relate to what you're going through. It's great to ask a lot of questions at this point, and it may turn out that a less-than-radical dissection is in order. I'll keep a good thought for you as you go to see the ENT tomorrow.

As I said, I had the radical dissection. The loss of the spinal accessory nerve meant that I lost strength in my right arm. In time, I lost strtength in my left arm and started to experience a lot of pain in both shoulders. I let 9 months go by (silly me) then insisted on some sort of solution. A referral to physical therapy started a painful rehabilitation, but within a month I had a lot less pain and a whole lot more mobility. I continuted the exercises on my own, and today I have almost full (95%) use of my arms/shoulders and rarely notice pain. (I had to invest a lot of pain to get the gain, but it was worth it!)

Ask your questions. Make the best choice for you. But know that there is a bright light down the road.

Ken

John Paul, welcome to the site. Sorry you had to find us, but hopefully we can help. As an update to my previous post on this thread from September 21, the strength in my right shoulder is slowly returning. I stopped physical therapy due to expired insurance coverage for therapy of this type. I am begining to have some nerve pain in my shoulder and neck, but I welcome it as I think it is the nerves trying to reconnect. This may be a little wishful thinking, but with my strength coming back, a positive outlook may help the situation.

As I mentioned in my previous post, I would always recommend the radical neck dissection, if for no other reason than to insure I had done all that I could to make sure no recurrance happened. But that is a decision you will have to make. My doctor spent an extra hour in the surgery to remove all necessary tissues to insure clean margins as well as the lymph nodes after chemo/rad. He avoided the nerves as much as possible and I think he was especially careful as I had explained my concerns of loosing my right arm usage. So I think that expressing your concerns is a good thing and will motivate the doctor to take extra care during surgery. Not that the doctor would have been careless, but an extra level of concern may help the outcome. Good luck with making your decision. Will pray for guidance and a good outcome for you.

Hi John Paul,

Welcome to OCF. Sorry you have had to find us but glad you are here.. Angst is a good way to describe what I went through before surgery, also.

I agree with Ken, don't hesitate to ask Your ENT and discuss it with him. Earlier in this thread, Robert gives a good listing of the different types of neck dissections. The more knowledge you have when talking to your Dr. the better. Am sending positive thoughts your way.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

You all have been so very helpful and I appreciate you so very much. Roberts listing is very helpful so I have much to discuss this morning with my ENT. I will let you know how it goes, but I am scheduled for surgery very soon. A t'ousand t'anks to ya!

Hang in there, John Paul. We're all rooting for you.

Maybe there is strength in knowing that we are all here to root for you.

Ken

Hi John Paul,

I too had an unknown primary for my first bout with this disease. They did a neck dissection on my right side only and did not need to cut any nerves or muscles. They did, however, against my request, remove my submandible saliva gland. I had only one lymph node that showed any cancer and except for the met to the neck was bascially stage I. Primary never showed up. Especially if you are planning to follow this surgery with radiation, you might want to limit how much damage they are going to do to your body in surgery. If this is really an unknown primary, why the exploratory expodition? Just some more questions for your surgeon.

Are you being treated a a major cancer center, I hope. If not, I'd consider a second opinion.

Take care,
Eileen

Hello John Paul,

Nice to know your not alone in your battle with the beast. This website is the most informative
forum on Head & Neck cancers you will find. It is a very tight band of brothers. There are almost 1800 members world wide. Ask any question and someone will reply. If you have read some of the older posting's your ahead of the game.
Write down all the questions you have before your appointments, you never remember them all when your there. Knowledge will empower you to make some difficult decisions. After you make your decisions don't second guess them.
Remember you can come here any time to keep us posted on your recovery. Who better to ask than someone who has traveled the path ahead of you?

You and your family have my best wishes as you start a most difficult journey.

Danny Boy

John Paul,

Danny Boy said, "Write down all the questions you have before your appointments, you never remember them all when your there." This is grat advice.

I remember too many times when I forgot to ask one of my docs an important question. Now I carry a crib sheet and a pen for noting the answers.

Ken

John Paul,

And I will add to that paper and pencil with - Take another person or more to hear the answers or tape record them. In our anxiety we sometimes don't exactly hear or may misinterpret what the dr is saying. Having another person with you to digest the info and help you remember it when you get home is very important.

Take care,
Eileen