Hi everyone,

Mary heard this morning that the lymph node removed still had "living cancer cells present" and the modified radical neck dissection will have to be done. Not a complete surprise, but disappointing nonetheless! How the hell does something survive after all that treatment?????
This surgery scares the hell out of my friend, and despite all the reassurance I can give she still thinks she is going to look "freakish". She thinks the right side of her neck is going to "cave in". She says "I know this is no time for vanity, but how much should I have to take?"
I know so many of you out there have had this surgery. If I could pass on a few words of reassurance and encouragement from those who have actually done this I think it would give her some comfort. I will print out your responses and let her read them. I SO want her to have this surgery (which she is threatening to not go through with) so that she can have the best possible chance of a cure.
If only I could have pulled Jeff out of cyberspace, maybe I could have convinced her to have the modifies RND in the first place-but she is a tough cookie to convince.
Also of some concern is "some uptake in the colon" on the last PET scan-we were not told of this last week during the pre-op visit. Now the docs want a colonoscopy done. Well, one step at a time.

Oh, how I had hoped my friend would luck out on this one. Damn!

Liz

Hi Liz-My husband had the surgery with the neck dissection and the removal of half of his lower jaw. He looks amazingly well. Many of our friends and family members have said that they were bracing themselves for the worst when they saw him but were surprised at how great he looks. Even days after the surgery he looked great considering what he went through. Other than losing weight because of the jaw issue and treatment he still looks wonderful. He had both sides of his neck cut open to allow for the jaw to be replaced. The scars are barely visible.
I wish your friend all the courage and strength to make this tough decision. She is so lucky to have you.
Sue

After the radiation and chemo, the neck dissection is a cake walk. It is no big deal. For sure the neck will no longer be completely symmetrical, but in my own case while I definitely notice it, most new people I meet do not. You can look at a picture of my final results in the flash movie that plays on this page - http://www.oralcancerfoundation.org/about/brianhill.htm For sure I'm no Brad Pitt, but no one stares at me either....

Choosing not to do this would be a HUGE mistake if there are active cells still there. The lymph system is a highway to the vital organs far away from the oral cancer. Remember that oral cancer doesn't kill you in your mouth, it kills by metastasizing to vital organs via the circulatory system or lymph system. It would only be a matter of time before this happens. They are not going to go away on their own. There really is not choice in this matter. And she's right - this is no time for vanity.

Remember that PET scans are NOT specific for cancer. Lots of things will elevate SUV's. (serum uptake values) Healing, infection, chronic irritation, and more will all light it up. Of places that a head and neck cancer would metastasize to, the colon seems an unlikely location.

Brian,

Who needs Brad Pitt??-you look fabulous! I need to get Mary to look at that picture because as you stated YOU can tell, but no one you meet on the street would ever know.
I saw her last night, and she is realizing that there is NO option-this is fight for her life, and she's already done the most difficult part.
As for the Pet scan, that is what I thought. I didn't think that was a usual area of metastasis-but your comments are reassuring.
Once again, this site is a life-saver to all out there dealing with this disease.

Liz

Liz - I am about the same age as your friend, I am 53, and had my ND almost 2years ago. EVERYONE tells me how they cannot even tell or see the scar. My doctors did the incision from the midpoint of my chin, right underneath my jaw, back to below my left ear and then they brought it straight down so that it wouldn't be as noticeable. (My hair covers the part under my ear) I have actually joked with my surgeon that he should have done the other side too as it was almost like a mini neck lift! Less wrinkles on that side! (not that I am that wrinkled yet anyway!)

As far as physical symptons, I do have some tightness on that side of my neck, numbness as well esp. my ear and side of scalp, but I really don't think about it much. When I first had it done, it was a little scary as I could not lift my left arm out to the side and then raise it all the way up, and had a droopy lip, but both resolved quickly. I did my physical therapy exercises religously and still do them when I think about it...

My husband had his ND on Feb. 5th and people we see now are always like - wow. I thought you had surgery or I thought you were sick, etc. He looks great!! It's all in the right ENT surgeon with plastic surgery skills or in having a plastic surgeon assist the ENT. He actually looks so good right now that I am almost embarrased for the people helping us and bringing meals to see him, because I think they will think - what the HE*&, he's not sick. :-)... Plus he has the confidence of knowing he's doing everything he can to fight this cancer. We figure being around to complain about the scars is alot better than being dead!! Good luck to you and I am still praying for Mary. She is really lucky to have such a wonderful friend in you.

As Brian says, the ND is a 'walk in the park' in comparison to the radiation treatments. Granted she will look like she has been 'run halfway through a guillotine' immediately after surgery, the scars will heal and no one will notice. Since she is having this done after radiation, if she has a good plastics guy doing the surgery, he can probably eliminate some or all the turkey necks symptoms many get after radiation. I've had two of these and the worse side effects have been to the muscles in the shoulders after the first one. Depends on what they have to cut. She may need physical therapy after surgery to strengthen shoulder. She needs to bite the bullet and get it done.

Take care,
Eileen

I go tomorrow afternoon to get another MRI. The surgeon is hoping that the flash that shows cancer on the right side of my throat, is a false positive. I sure as hell hope so too. If it's positive, I get the right side complete dissection to match the left side. LOL and just who the hell needs twin sides on their neck??? I should know before the week is over and will post. Good luck all.

Jim- I will keep you in my prayers.

Hi Liz,

My Dad had a RND, which I wasn't aware of prior to his surgery. I was surprised because I didn't know, and was surprised that there were no bandages on such a scar. But thanks to many on this board, they convinced me from their own personal experience that the RND looked worse than it was, and that after just a few days the drains would come out and the scar would melt away, and they were right! Today, 3 months after my Dad's RND, he said his shoulder doesn't hurt and he has good mobility, and he doesn't look "freakish" at all. I looked up RND on You Tube, and actually watched the entire procedure, in 3 parts I believe, and that took the fear out of it for me, once I understood.

My best wishes to Mary for a full recovery.

I too had the ND in September 2006. It all looked a little scary to start with and I also had the scar from the temporary tracheotomy. I was a quite self conscious to start with using a combination of scarves, polo neck tops and elastic 2