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