David's point and mine are Neck Dissections shouldn't be taken lightly and in no way an outpatient procedure without complications.

I can't use half of my tongue, affecting eating, drinking, swallowing and most importantly kissing.

I've lost function in my lower lip, affecting eating, drinking and kissing (again) and it's disfiguring.

I'd go through chemo and radiation again rather then have these side effects, they are not a breeze and I'm sure anyone who's experienced them would feel the same.

Hi Elizabeth,

So sorry to read about your diagnosis.

I hope we can be of support to you as you go through this journey. And, I hope you have great support at home...three little girls sounds like a busy household.

I'm so sorry you have to deal with this at such a young age. I'm sure being an oncology nurse has it's advantages in understanding treatment options and medical terminology, but I am sure it doesn't help prepare you for the day when you learn you are going to be the patient.

Will keep you in my thoughts.

Elizabeth

Welcome but sorry you had to join our little club. As you can tell from the posts on your thread, this is not a bashful group (at least the minority of us who post rather than read- with over 6,000 members, it's still easy to round up the "usual suspects" here). I have mixed feelings about second opinions on TX since I went both times with my Georgetown CCC suggestions primarily because they made sense and sometimes too much choice is counterproductive especially if you get a recurrence (god forbid). this way i don't worry about maybe I should have picked the other TX plans. Of course I was lucky in that my team decided that a neck dissection, jaw surgery etc were all too aggressive at first. I am living proof you can get massive radiation and chemo and still get the neck dissection, glossectomy, traech etc later. I remain shell shocked about how much harder the surgical options were on my long term quality of life -with the swallowing, speech, disfigurement issues. So I just wanted to wish you the best of luck.
charm

Jim,

It's not about how easy one surgery may be when compared to others....it's about whether you need the surgery in the first place. No surgery is good unless the benefits outweigh the risks and complications. I thank Moffitt everyday I read about someone's ND. Because of them I avoided an unnecessary surgery. So that's my advice, before you go under someone's knife, make sure you have a consensus of opinions from the most qualified professionals you can get.

Hi Elizabeth -
I echo Margaret's thoughts for you (a couple posts back). But I do want to share with you my husband's experience(s). I rarely read in here about jawbone "shaving" which is what he had done at Shands in Gainesville several years ago. I hope I remember his treatment correctly (as he has had 4 small OCCs over the years). He had a small cancer on his gum so they removed 2 teeth at that time (he lost a third tooth with a later surgery) and shaved the jawbone, none of which showed any bone invasion. He also had a neck dissection in 2002 because there were 2 suspicious nodes circled on his xrays but there was no cancer, in any of the nodes removed. Because all his cancers were so small, clean, and well diffentiated, they decided against rads and chemo each time. He is doing well today, but retains some numbness on his ear lobe and neck from the dissection. But he didn't have the problems that Eric had with his. He has more trouble eating with the missing teeth than with the remnants of the ND surgery.
Just another voice heard from. Best of treatment to you. JaneP

Thanks everyone! WOW it's so much to process!!! I am confident on the choice of sticking with MDA, afterall they have been the most thorough with my treatment. All the doctors that I have seen would have done relatively the same surgery. After meeting with them yesterday, it appears that they are only going to take out the ramus of the mandible, which I thought they were going to take half of my jawbone, so this is better. Chemo did not work because my CA is slow growing and chemo doesn't work as effective as it would with a fast growing CA. THe tumor is too massive for rad alone, so not having surgery is not an option. I wish it was!! It's a scary time, I will do anything to make sure I am here for my little girls!!!!

Eric,
You fail to mention that besides the Neck disecction, you also had a RT Mandiblectomy w fibular free flap. I doubt many of the side effects you are complaining about are all due to the ND unless someone really screwed it up.

I have had two of these, one left and one right. I have no side effects on the one on the left. I had a neuroma from the one on the right side that caused me to have sensitivity to the ear, but that was a screw up on the surgeons part.

I suspect your loss of movement in the tongue and lip are not from a ND but from the other surgery you had. While some people do get neck cramps, I've never heard anyone exhibit your complaints from a ND. People, however, do complain about loss of function in their shoulder and arm. Whether this happens depends on what quadrants the surgeon removes and what muscles he had to cut.

While I'm with David in not doing unnecessary surgery, in some cases a ND is necessary. In my case, I had mets to one side of my neck with an occult primary. Radiation might have got it all, but I wasn't going to take the chance. Most people do not have the all the side effects you describe.

Take care,
Eileen

Eileen and others,

I would never advocate not doing anything that was medically necessary. My only point is to do your homework, do your due diligence and make sure that what is recommended for you is needed. Certainly err on the side of being conservative when your life is at risk but do try and make sure you need the treatment recommended. ENT's are surgeons so guess what they are going to recommend? That's why I always tell people to get to a CCC, if at all possible, and have a team evaluation.

Actually, I was given a choice as to whether or not to have the ND. This was 1997 and knew nothing about oral cancer. I did know a coworker that had a lump in her neck and was very dead 9 months later. Her's was mets from breast cancer but I didn't know that then. So I was running scared and not taking any chances and wanted this out NOW. I don't think they told me about the side effects, but I don't remember.

Take care,
Eileen

Eileen, I proudly post my procedures in my signature for all to see, which is how you knew.

My surgeries were all done in one happy fun fest, I had them all done at one time. My surgeon explained to me the possible complications and probabilities to each step they did and was there to explain to me why I have the issues that I have. I knew the complications to each step as well due to a wonderful tool called google before I went under the knife.

While I will point out that I'm probably worst case scenario here (surviving)as I had a stage 4 primary that took up most of my face and jaw but also I had a stage 4 lymph node as well with several hot nodes.

However each complication listed is well documented and easily found in an internet search if you don't have access to an Otolaryngologist.