I want to thank all of you that responded to helping me adjust to having the neck surgery. One of the things really bothering me and keeping me awake nights is that the surgeon mentioned I'd have to decide what to do if they find cancer on my voice box. I'm assuming that before you go in to surgery, they always want to know prior what your wishes are. This threw me for a real loop. I'm trying to be so positive. I'm still recovering from radiation, chemo and Iressa. I'm under the impression that I won't have cancer cells.

Anyway, about all I'm prepared for is to wake up from surgery less a few neck nodes and some biopsies that have been done. I don't think I can adjust to waking up and finding out that I'll never have my own voice again. It just seems so harsh to keep being dealt the bad cards in the deck.

My problem with grappling this is nobody has told me what to expect in the worse case scenario. I would certainly hope that after such a procedure, they would at least have someone counsel me so I wouldn't get too depressed about it. One of the reasons I'm so terrified is that for the past month, I've had a couple weeks of no voice at all. Being in my home alone and having the phone ring was a terrifying experience when I knew I couldn't answer it.

I keep wavering between "If they find cancer, it's best that we cut it all out and find a way to adjust" and "No way, there has to be other options, I should decline to have my voice box removed until I know more information and options"

Today, I was able to talk to my best friend long distance over the phone for the first time in weeks. It felt wonderful. In fact, I've finally been making progress in healing to the point of trying to find foods that I can eat and doing normal activities like house cleaning. It just seems terrible to think I'm going back into the pit just when I'm getting some of that good ol' "normal" back in my life.

Anyway, those that have had a neck dissection probably have had the same talk with their surgeon. I don't know what to decide yet and I'm trying to educate myself on what to do if the lab finds cancer on my voice box while I'm on the table being biopsied. I wonder if surgery right then and there is the truly BEST option. And if I agree to have my voice box removed what I am to expect as far as recovery mentally and physically from this.

I guess I want to know the pros and the cons going in. I'm still unsure what my decision on this is going to be, but I want to make the BEST decision. Yes, I know it's been so hard dealing these past few months with the cards I've been dealt. I want to still focus on being "cancer free" when the surgery comes up next month.

Thanks in advance for your input and advice. You guys are great.

Jen

Jen
You need to go back to the hospital for some proper councelling on what whould be the worse case sinario, you need to know all the options, possible artificial voice box? what else would they be able to do for you? It sounds like they don't think it will come to that but dropped it as a possibility and no way can you make an informed decision without more information..
Hang on in there girl
Sunshine... love and hugs
Helen

Hi Jen,
I am a total laryngetcomee and know the terror of not being able to speak or call 911 and tell them what is wrong with me. Although I could speak 8 days after the surgery, it was an on and off thing. I have always been very independent so having this sudden fear was new to me. I have what is called a TEP, a transesaphageal puncture, which is a whoole beteen the esaphagus and the trach that allows me to speak. There is a small prosthesis btween the trach and esaphahgus that forces air up the esaphagus to allow me to speak whne I cover the hole in my neck. My voice which was always very low is now even lower, but intelligible.

I truly do not like the casual way your doctor is treating this. This is major major surgery and may involve taking an artery from your arm which will then need to have skin taken from your leg to cover the area on the arm, etc. I needed none of the extra procedures and my trach and neck dissection took over 14 hours. You should also be being evaluated by the speech dept. to see if you esaphagus will vibrate to allow you to have a TEP.

I would not want to ge into surgery for a neck dissection and come out a toal larygectomee without knowing all my options first. Is there a tumor there? Can it be removed by laser surgery to save the voice box abd if so, will you still be able to eat. Mine, though tiny, was in the wrong spot so they couldn't get enough of a margin and alow me to eat. What other options. You had IMRT. Did it hit the voice box or can you have more rads to this area if it is cancerous.

I'm not a surgeon, but I fail to see how a neck dissection, unless they do a trach, would even expose your voice box. I'd be asking these guys a whole lot of questions before I got on that table, like 'can't you knock me out and take a look now so I can make some intelligent decisions'. They thought they were going to do lser surgery on me, but once I was under anesthsia and they could see the area better, they decided against it. I could have gone to FL for a second opinion, (there were two surgeons in the US that did this at the time), but opted not to. What makes this dr think he will find problems on the voice box? \

See if you can get some answers and get back to us. Definitely find out if more rad and chemo or laser surgery are on option. You wil probably have to travel for laser surgery.

It's been almost 4 years and although I can't swim or sing which I love, life is good. I hope they find nothing, but it is not the 'end of the world' if they do. Sorry to ramble so, but I am pissed at the way your are being treated.

Take care,
Eileen

This is why I'm asking you folks in the forum. As I've explained, my ENT surgeon is kind of a rush rush man, and thinks quite a few of my questions are absolutely ridiculous, but he brought this up last week and told me it will come up at our pre op appointment. "You need to decide if we remove your voice box if we find cancer cells" Hell, I'm trying to think positive thoughts here. I'm trying to recover from radiation, chemo, and Iressa. I don't think they WILL find cancer cells, so I don't know why he would just rip my voice box out so willy nilly without some other plan in action as to how I am to recoop from such a procedure.

This will be my first neck dissection and hopefully my only surgery for this, I'm assuming the surgeon's sat you all down and told you.. well, this could happen.. and this could happen....

The more I think about this sudden rush at me, I'm going to refuse to have anything "extra" done to me than what I'm going in for.

I'm planning to be in the hospital for five boring days after a simple neck dissection that removes only my lymphnodes and takes some biopsy samples.

Everything else can wait.

Thanks... I am beginning to try to calm myself down.

Jen

Hello Jen

I gave instructions to my surgeon in front of my family that I didn't want anything 'extra' done should anything unexpected be found during my radical neck dissection. We agreed that it would be discussed and performed at a later date with my input if necessary. It wasn't necessary but I was glad that we'd had that discussion.

I wish you well with your surgery, love and light from Helen

Thanks for your input once again. I was beginning to get even more worried than I need to be. I am going to only do the neck dissection and NOT anything extra. It's all my small mind can grasp to get through the neck dissection without having to worry about the terror of waking up missing more parts than I was prepared for.

Besides, I'm trying to think POSITIVE here. I cannot continually be drawing a badly dealt hand and expect to hear some good news.

Jen

Hi Jen,
I know your are paniced, but please read my previous post carefully again. Why do they think you might still be cancer in the voice box. What are your other treatment options - laser, more rad and chemo. Would it be a partial or total laryngectomy. These docs are not giving you the info you need to make an informed a treatment decision. Push for answers.

Take care,
Eileen

Eileen, the surgeon just sort of dropped that "oh, you need to tell me at the pre op appointment next time what you want me to do if we find cancer in your voice box" It scared the shit out of me. After getting three nose scopes from the guy and being told that my tumor on the supra glottis is melted away, I thought I'd have nothing but GOOD news. Indeed I'm hoping to remain positive. One of the reasons I'm asking here, is that he doesn't like to spend much time explaining things and I want to be prepared for this next appointment. It's much better to have knowledge beforehand so I can be intelligent and not so freaked out. After reading your previous post, the entire procedure seems to be more complicated too. I don't see how during a neck dissection that he could automatically take out my voice box and have this be some sort of bonus for me. The surgery itself and the replacement for getting some sort of "voice" seems to be much more complicated.

I want to get through the surgery without any rude surprises when waking up. I'm going to elect to have nothing done except the nodes and biopsies. It's all I can handle.

Jen

Jen, not to throw cold water on your "good news" scenario, but it is possible to wake up from your surgery to find that they didn't do the surgery due to not getting a pathology report back for the samples they take prior to doing the dissection. It doesn't happen a lot, but it does happen. That's what occurred with me and it was a little disappointing. I got through it, and had the dissection at a later time, but waking up and finding it not done caused me to be a little upset. Hopefully, this will not happen and you will sail through like most patients, but if not, keep in mind that this too shall pass.

Jen,
I am not certain if they can do they two ops separately if you need to have your voice box removed. You are also a recent rads patient. I had my surgery 4 years after radiation. Operating on irradiated tissue is always a iffy. If you really still have cancer in the voice box area, will this require a permanent trach like I have? If you really still have cancer in this area, you probably want it out ASAP. Talk to your surgeon and radiologist about your options if they find you are not cancer free. I do hope you are at a major cancer center. I hope you never have to walk in my shoes.

Take care,
Eileen