I don't know if anyone still reads this or not. I just discovered this today. I had Stage 2 cancer of the voice box. I was talking right after my radiation treatments, but now all I can do is whisper. It has been 5 months. My voice box keep swelling up and the doctors don't have an answer. I forgot to add that I smoke. They tell me to rest my voice and not even whisper, but it is hard. Will I ever get my voice back? Anyone know what would help? I have 5 year old twin grandsons, that I am dying to read a book to and cannot. Please help, I just want to talk.

Welcome. I lost my voice for a couple of weeks after radiation, but that was all. I suspect you have heard it many times, but it would be in your best interest to stop smoking. I would guess that alone could hinder your ability to regain your voice. I know that is a difficult thing to do, but if not for yourself, then perhaps for those darling grandsons? I hope someone else will have a better answer for you.
Hang in there!

Do you still have your voice box? If you want to keep it, I suggest you quit smoking YESTERDAY. I tried smoking 1 cig a day about 6 months after radiation and 4 years later wound up with a cancer of the larynx. Even though STAGE I with no mets and very tiny, wound up as a total laryngectomee due to location on larynx.

Also, have you had a CT scan? Did they scope you? My tumor was hiding in a fold and until it had grown some, it would have only been able to be seen under anesthesia. I had a voice change and occasional loss of voice in the 5 months before they found the tumor. I had no swelling and the way I found mine was a minor pain when I swallowed a large vitamin.

Hopefully you are not experiencing a reoccurrenc, but I would make certain that I was being treated at a NCIC center and someone was watching this carefully. Voice changes are one of the few warning signs of oral cancer.

Take care of yourself and quit smoking now before it is too late. Take it from who didn't.

Eileen

Thank you for replying. They keep checking once a month for any changes. They did go back in and do another biopsy which was normal, and also I had a Pet Scan. The pet was not normal, but not large enough number to say it was cancer. They think the abnormality was due to the large inflammation and edema. My doctor was worried that something might be hidden, but so far they haven't seen anything. My voice was better, before they went back in to do a biopsy. My last radiation treatment was Feb. 3rd, 2004. How come you had the total larynx removed. Why didn't they do radiation on something so small? They told me I would talk better than I am now, if I had my voice box removed. Right now, no sound comes out. I went to a speech therapist, and they have no answers. I know I need to quit smoking. I have quit before, but only motivated then before I had cancer, because I wanted to begin running. Ironic, isn't it. For some reason I cannot get motivated. They don't want me doing any exertion because I am so swollen they are afraid my voice box will cover my windpipe. Do you think the smoking is causing all of this? I was talking and feeling great right after radiation. I am a very vocal and talkative person. It is part of my personality. This is killing me. But most of all I miss playing and yelling with my grandsons.

Please help me, somebody. I will try to quit tomorrow. Anyone have any thoughts for me. Thanks for replying so quickly.

Why not try TODAY! This tomorrow stuff is just plain old denial bullshit. How much of a "convincer" do you need anyway - the cancer you got in the first place wasn't enough?!?

They couldn't do radiation because I had had all the rads I could have when I had the occult primary in 1997 when radiated everything from the top of my ears to top of my armpits. They were going to try to remove this tumor with a laser, but it was too close to the esaphageal opening to get a clean margin. Only other option might have been chemo, but they didn't think it was wise or hold much hope with that. Meanwhile if I risked that and it didn't work, then I might have had mets. No thanks.

Here's hoping the best for you.

Eileen

Are you able to talk and if so how? I am sorry, I am not trying to be nosey, I am just scared it may happen to me. If you can talk, what does it sound like?

Linda

Hi Linda,

Yes, I can talk most of the time although not very loud. I am easily understood. The tone of the voice is very low, but I was always a second alto to 1st base range anyway. I wouldn't want to try to talk for very long, but there are people who still teach school etc.

I have what is called a TEP, a transesaphageal puncture, which is a small incision between the back wall of the trach and the esaphagus. There is a small plastic prosthesis with flap on the esaphagus side of it that allows you to speak. When you cover the trach hole with your finger, it forces the air up your esaphagus and allows you to speak. The other options are an electromagnetic device(not easily understandable) or esaphgeal speech which is good but difficult to learn.

The TEP is the easy way out but not everyone is eligible. Sometimes the surgery fails. The TEP is great when it works, but then there are times when it gets stuck open and you wind up pouring coffee down your lungs (cough, cough) or it gets stuck closed and you can't talk.

Not only is there the speech problem, but you have this hole in your neck so you can no longer swim, surf, snorkle. You lose most of your sense of smell. You can't sing at all. I used to love to harmonize. Hopefully, you are not going to have to walk in my shoes, but I have noone to blame but myself.

So, have I convinced you to put THOSE D..M CIGS in the trash can yet?

Take care,
Eileen

You would think that having oral cancer would be enough of a motivator to stop smoking and drinking, but it sure wasn't for me. Even after the floor of my mouth was removed and I was left without any bottom teeth, I went back to smoking and drinking. Hmmmmm, I wonder if we have a death wish. I make my living (dispatcher) with my speech and after they cut out not only the floor of my mouth but some under my tongue, I was left with a speech defect and severe dry mouth. I went through 16 hours of surgery, 12 days in intensive care and 6 months of daily radiation. Yet, one day, I smoked one cigarette. Stupid, crazy, insane ? Yes.

I was a 2 pack a day smoker and quit cold turkey in 1976 - before they had nicotine patches, gum and the other stuff. I worked for Siemens Medical Labs which built Medical Linear Accelerators and watched many lung cancer patients rolled in to treatment (almost ALL, heavy smokers - 25 years). It wasn't pretty, it convinced me that I never wanted to end up like that. I watched a couple of them die on the table in the middle of radiation treatment. Ironically 35 years later I was treated on a Siemens LINAC myself. I never even considered other forms of cancer from smoking.

As a former addict and alcoholic I do know this much about addiction. You have to WANT to quit and then be WILLING to go to ANY lengths to do it. If you tell yourself you're going to quit tomorrow then you have already lost because "half measures avail us nothing".

The addictive behavior itself is usually only a symptom of the real problem. This is why in AA putting "the plug in the jug" is only the first step. To quit an addiction requires the help of a higher power, community (going to support group meetings), accountability (having a sponsor to answer to) and working the steps to uncover the root causes.

I implore you out there who are still drinking and smoking that the light at the end of the tunnel IS in fact an oncoming train. Get OUT of the problem and INTO the solution and guess what - the PROBLEM GOES AWAY!

Consider the first 3 steps:

1. We admitted (the honesty part of it) we were powerless over alcohol (drugs, tobacco, whatever) that our lives had become unmanageable. (having a recurrence of oral cancer definitely qualifies here or even tempting recurrence) How much more unmanageable can it be having your jawbone or larynx removed or fed through a tube in your stomach. Death is ultimate in being unmanageable.

2. Came to believe that a Power greater than ourselves could restore us to sanity. (this will address the insanity portion of it)

3. Made a decision to turn our will and our lives over to the care of God, as we understood Him (not the Pope's or ministers definition of God, but rather a power greater than yourself of your own definition). (this is a daily program)

I am sure that your hospital or clinic has a smoking cessation program - find it - use it, or I will have have to thank you for improving my survival odds (which I would really rather not do).

In AA we call the disease "cunning, baffling and powerful". Smoking is worse in many ways but it can be conquered if you are "honest, open minded and willing". It's not an easy program but one that has immediate rewards...