Hi, I have a question about surgery. Richard's doctor said that they would only do surgery to remove the lymph node if they found no primary. Otherwise he would have TX and chemo and that the node would shrivel up. I'm reading much about neck dissection and I'm unclear as to why that would be necessary if the TX and chemo eliminates the cancer. Sorry ahead of time if this is a lame question, but I know I'll get an answer here. Thanks, Geri

Neck dissections are a matter of some controversy in treatment of OC. Your husband's diagnosis seems similar to mine. I called mine T2, but it was 2 cm, right on the border of T1 and T2. I had 1 obvious node, but when they did the neck dissection, they found a second node with a microscopic trace of cancer.

There appear to be two distinct schools of thought on neck dissections. Probably more, but these are the ones I have discerned. First is the school that your husband's doctors appear to follow -- ND is unnecessary where N0 or N1 and primary is small. Radiation will kill the cancerous cells in the lymph nodes. Neck dissection is reserved for situations where there is an incomplete response to the radiation/chemo regimen, or where recurrence arises.

The second school, which my doctors followed, is more of a "belt and suspenders" approach, relying on both surgical removal of the lymphatic pathways that OC uses to spread, and the radiation/chemo to kill any stray cells. Of this school, some prefer to do the surgery after treatment, while others do it before radiation and chemo. I had the latter.

There are pluses and minuses to both approaches, so tough to say that one is "better" than the other. Becaues neck dissections can and do have residual effects on shoulder and neck function and sensation, many doctors prefer to hold that surgery in reserve. I have ongoing shoulder and neck pain/stiffness, but it is very manageable. Would I have obtained the same results without the ND? Maybe yes, maybe no. Cancer free and doing pretty much anything I want today, so I will thank my lucky stars.

Hope this helps.

I did not opt for a ND and Moffitt gave me the choice and were leaning towards the no ND as well saying they could always pop it out post Tx but they strongly felt the chemo/rad would take care of my cancer. So far, I'm very glad I didn't have the surgery.

Has he been tested for HPV?

JeffL spelled out the opposing positions in a very evenhanded manner. While not as HOT button an issue as the PEG debate, Neck dissections decisions are similar in that the medical treatment team usually has a strong point of view. My RO felt strongly that neck dissections were "insurance". My ENT surgeon saw neck dissection as much more of an risk analysis issue. Like David, I was very grateful they took my concerns into account and we decided NOT to have one. My admittedly non expert research had indicated that approximately half of the neck dissections were "unnecessary' in that no cancer was found in the lymph nodes. Those figures may be changing now as more and more doctors opt out of rigid treatment protocols. No body wants a neck dissection but in some cases they are necessary.

Jeff and Charm have really hit the nail on the head. My ENT surgeon didn't hesitate once the biopsy came back "suspious" of SCC. Once you're opened up, they can immediately run tests on the lymph nodes to see if cancer is present and go from there. In my case it was so they took them, got a more complete report a week or so thereafter, then set up the program with my RO. As Charm, notes there are lingering ramifications of surgery but I think this path was the right one for me. One thing's for sure for all of us . . . you'd better feel real good about the hands you're putting yourself in.

I had a right side neck dissection. I have had a lot of pain and stiffness form the surgery and radiation but in the lastf ew months I've finally turned the corner. I've done lots of physical therapy to break up the scar tissue and strengthen the muscles.Yoga and different excercises I've been taught have made a huge difference. My neck is uneven too but all this is fine with if it means that I am cancer free and hopefully will continue to be for the rest of my life.

I had a right side neck dissection in December 06 even though I was T1N0M0. The only explanation I was given was that even though the lymph nodes were clean there was a higher chance of recurrence if the lymph nodes were not removed. Didn't work for me. I had a recurrence in Sept 08.

I like the way you are asking questions. I was a little too accepting of my surgeons recommendations. Another good reason for a CCC.

I had a bilateral neck disection had 54 nodes removed. I am not sure if that was the best route for me. I guess I will find out when I do the wash...My doctor also knew how I felt about radiation and I am still terrified about the thought of having to have it. But then he didn't know that till after they decided surgery was the way to go. I got a clear bill when it was over with all nodes removed were clear it is just getting clear margins that we had to worry about. I am still in process of healing painful yes sometimes. Stiffness yes...MissKate it would be nice to know what exercises worked for you...at present I do some but always feels like I have pulled muscles...and a great deal of headaches

I have had 2 bilateral neck dissections. The first was in April 07 to remove several nodes - 1 being positive. The second was 12 months later in April this year when they cut my neck open again to replace and reconstruct my lower jaw bone with new bone.

Following the first dissection my neck healed up really well, but then the radiotherapy certainly tightened up my neck alot, especially seeing there had been alot of muscle removed.

Now 8 months on after the second dissection it is still really tight and stiff but some physiotherapy/massage seems to be helping a little.

In my situation having to have another neck dissection following radiotherapy obviously has made the healing process take twice as long as what the first one did. The radiotherapy just shrivelled everything up.

Karen

I'm sitting here reading this and rubbing my neck dissection scar and edema right now! I had one positive node and had a bunch of other swollen ones so I had a neck dissection. Being as young as I am, I wanted the best chance at getting rid of all the cancer so I opted to have the book thrown at me in a sense. Also, since I had the neck dissection, I did not have to have my jaw cracked or whatever because they went through the area under my chin to do my tongue reconstruction and stuff. So I guess that was a bonus for me.

Hi Stephanie,

I try not to dwell on it, otherwise I would go crazy or should I say crazier, but I wish that I had of tracked down someone that would of been able to perform my first operation without slicing my jaw and opening me up like a door.

Unfortunately, in this country up until recently most of the surgeries where a large amount of the tongue had to be removed like mine they were accessed by 'cutting and shutting' the jaw.

Now they perform them by going under the chin like yours.

Geeez I can't tell you how much drama that would have saved me had mine of been done like yours. The consequences of which I am still dealing with in a huge way. It gives me a headache just thinking about it - The IFs, BUTs and MAYBE'S...!!!


Take care

Karen

Karen-

I was told that they would determine during surgery whether or not I would have to have my jaw cut but since I was having a neck dissection, they were being very optimistic that they would not have to do it. I am very grateful that I did not have to go through that and can't imagine having one. My recovery in the hospital was long enough because I got pneumonia, so I'm glad I didn't have another thing to deal with. But anyway, I guess in my book that makes the neck dissection worth it!

THe neck dissection must never quit bothering us or at least me. I am glad they did it I guess and it is hard to see the scar tha wraps halfway around your neck. Heck it still oozes sometype of fluid that is hard to see until it dries, then it looks like dried egg white, shiny. Have to see the Dr about my neck. Something just isn't right. Getting back to the point where it hurts too much in my mouth to want to eat. HOPE NOT!!

Yeah, I was always told that because of my age that my scars would be redder and wider than most people's because of the elasticity still in my skin. This is true for the scar on my arm where they took my vein (above the flap donor site) and for my trach scar which is pretty noticeable and pink, but my neck is an itty bitty slightly pink line (and I had a bilateral). You can barely see it. My ENT is amazed that it healed up so well. Now if only this little bit of edema will go away!

Jim- go see your doctor!!! feel better!

Jim, I agree -- Time to visit the Doc again -- Same thing was happening to me, slowly getting more painful (Likely because the cancer growing was pushing other tissue to the sensitive point).

I might have to make a choice, either the cancer or the abdominal anneurysm. Hell, I have whipped both before and I can whip them together if I have to.

Yes you can!!! I agree and with an army of angels well how can you not win...

Jim, be sure you are drinking plenty of water, especially at this time of year. The Xerostomia really gets bad for me at this time of year, and when I get busy, I drink more crap (i.e. coffee and soda) and less water. I pay for it as my mouth gets drier and it burns. Maximize the water, and the burning and pain go away.

Just an idea.

Jeff, I only drink coffee in the morning about 6 cups for sure milk in the evening with a snack, and the rest of the day, I always have a bottle of water with me. Probably drink at least 5 -6 bottles of water daily. I use the biotene at least 3 4 times a day and brush 2 times with the paste. I hope you have a great Christmas for you and the family.

Karen,
I had the same thing, jaw split but part of mine removed. I know what you mean! It's a fight for me always.
They took my jawbone and found out afterward that there was no
cancer in the jawbone!!! Oh it is suffering but I am alive and OK>
So question your doctors. Sometimes I think we are sometimes an experiment unintentionally.
Bless us everyone

I was an experimental trial program at ohio State and I would bet I was a guinea pig. It caused me more than I should have had done , but if it helped learn something for future patients, it's all well and good.

Being a registered Organ Donor, when the time comes and I am passed my 'use by date' they can do what they want to with my parts, hopefully save other lives, but up until then I'm not as giving as you are Jim. I won't be a guinea pig.

On request, I did approve the donation of the part of my tongue that had the tumour in it to the medical university. Unfortunately I was not able to use it anymore!!!!

Karen

Karen, I really didn't volunteer to be a guiena pig, just part of an experiment. LOL Live and learn they say and at my age, it's about time to start the "Education of Jim."LOL

Man you guys are amazing. I can't imagine what I would have done if I had to have the same surgery you guys had to put up with and I thought I had it bad?? Hump, I was a babe in the woods compared to you guys.

Naw david, in this group of ours, there are no babes in the woods Just a rough tough bunch of fight to the end people that are going to win most rounds.

Maybe but I only had to fight for one round and some of you go 16 rounds. No comparison. Jim I think you had Stage 6 and they just haven't figured out how to get other doctors to understand that.

I just had my surgery on 12.20 & was out of the hospital on 12.25 (Merry Christmas to me!) My staples came out the morning I came home but I still have the tape over the scar. I am dying for it to fall off so I can take a peek. He tried to do it right in the "crease" of my neck. I am hoping vitamin E will help a lot!

Actually I was surprised even with having an infection in the scar healing is really good a lot of people don't even realize or see it unless I point it out...I think for the most part if they can hide it they do. They are fantastic... I know my doctor was!!! My doctor wouldn't let me use vitamin E for a while until the scar actually closed I am not sure why but I think my nurse told me. But I forgot just knew not to use it right away I do now though on all scars and it is helping. Then I went to the mall around christmas and there was a kiosk who sold cream to heal scars for the rich and famous...$60 for a tube the size of a lip balm...there are all kinds of things out there that help but I truly think you will be pleasantly surprised. Besides whats the heck I consider them my battle wounds of the war waged against my body and wear them proudly. For me I don't think I want them to go away totally keeps me humble..

I just found this post. My father had right side neck dissection on Feb 9. They found a spot on his tongue was cancer and a scan found 'something' in his nodes. Immediately scheduled surgery and doctor said no chemo or radiation needed. I wish I would have had more information then because he just went with it and he wasn't at a cancer center, went to Otolaryngology Associates. Ear, Nose & Throat Medicine and Surgery and Head and Neck, Cosmetic & Reconstructive Facial Surgery. My father is recovering well and evidentely they removed all of the cancer, but I have no details on Stage (Dad just said Stage 1), how many nodes were removed, how many of them were cancer, what the margins were, why they decided to just have surgery, etc. I gave my dad a list of questions to take and ask the dr, but dad said that the doctor was going to e-mail him the answers and I haven't got the answers from my father yet, if he's gotten them from the dr. I'm pleased with the outcome, but I wish we would have had more information and options given to us. There's another side to the contraversy.

My boyfriend had a modified neck dissection, from what i gather, what makes it modified is that they kept the big muscle.
He was also of unknown primary although they did suspect the left tonsil (he also had that tonsil and a bit of the tongue removed but not much). he had a positive node but only one.
He had radiation that was part of a trial, targeting the whole area of neck nose throat and back of head, this type of radiation was also meant to minimise the long term damage to the taste buds and saliva glands. the latter seem to come back and go away especially the saliva, but it seems to be better now.
His neck is now un-numbing and is sore. he is going to ask for physio this week as the pain is pulling him forward and side ways, which is terrible for his back.
They didn't give us a choice for the radiation, well not a choice as such it was you either do this or your cancer will spread and ....
Needless to say we chose the neck dissection and radiotherapy.