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...

Hi Everyone.
I have a question.
Do a majority of the people in this forum belief 100% that their cancer was a cause from smoking and/or drinking, because the oncologist or surgeon said that? Or were there other factors involved along with the smoking and drinking?

The anecdotal evidence is that 75% of head and neck cancers are directly caused by alcohol and/or tobacco use. New studies are demonstrating that HPV and Epstein Barr virus may also play a role.
For more information:
http://www.oralcancerfoundation.org/facts/alcohol_tobacco.htm

http://www.oralcancerfoundation.org/facts/humanpapillomavirus.htm

Also look under Oral Cancer facts: Risk Factors

I don't know whether or not tobacco played a role in my cancer although alcohol use certainly may have as well as the pot I smoked over the years. I was exposed to a lot of second hand smoke playing in nightclubs until they outlawed it in California. Tobacco use is linked to almost every kind of cancer so who really knows. One thing I do know is that it won't make your health any better.

Neither my head & neck surgeon or either oncologist had any explanations. I think most tend to avoid that to eliminate guilt from the equation. After you are Dx'd what are going to do then anyway? - why waste time kicking yourself? Save it for the fight of your life. Recurrence is an especially bad deal so stopping smoking immediately will have many benefits.

I agree with what Gary has said. I will add that unless it was from secondhand smoke, my daughter's cancer was definitely not from smoking and drinking. She did neither except for an occasional wine cooler or mixed drink, and by occasional, I mean a few times a year. She was in the minority, though.

Just for the record, since my husband smokes a pipe, my other daughter smokes cigs, my son and son-in-law use smokeless tobacco and all except my husband drink too much, I fully expect to have to deal with oral cancer again sometime in the future. I truly believe that tobacco and alcohol use are the 2 worst threats to good health in the world.

Rosie

75% of all oral cancers are directly related to lifestyle issues such as smoking and drinking. Viral causes are rapidly increasing, and a population of non-smoking OC cancer patients is growing in numbers. Anyone who hears their doctor tell them that they got this because of smoking and drinking, and had the personal history to accompany that comment, need not believe that specific doctor. But they should believe that what he has said has been supported by literally tens of thousands of articles published by treating doctors, researchers, etc. that have done the math. Tobacco causes thousands and thousands of deaths a year. Gary has posted it in detail in another post this week. Tobacco, at least initially, is a choice...until the addiction kicks in. While some individuals do not get cancer from tobacco use, even after years of using

As a side note, and for your information, my surgeon is doing a study at Sylvester Cancer Center of all of the oral cancer patients seen in the last two years. Of the 1640 cases, 241 were just like mine, ie: Primary in tonsil and met to lymph nodes. He is corrolating many different aspects of the cancers, but one of his early theories is that using mouth wash with alcohol may contribute to cancer in those patients who do not drink or smoke. I smoked and drank for 38 and 34 years, respectively, so I know what caused my cancer, but for those who didn't smoke or drink, watch that mouthwash.

The mouthwash issue has been talked about for about 15 years to my personal knowledge, and probably longer than that in reality. There used to be (a decade ago) some mouthwashes that had extremely high alcohol content. While it was never proven that they actually hurt anyone or caused any cancers, they were removed from the market.... primarily because too many kids and down on their luck people were DRINKING the stuff since it was easy to get and cheaper than the real McCoy from the liquor store. Published documentation of a direct cause and effect from this tale of mouthwashes, which never seems to die in spite of the facts, does not conclusively exist. It is still beat to death on web sites all over the place. But if it were causing cancers, it would be off the market in a heartbeat. The FDA and the private lawsuits would quickly see to that. Listerene

Kirk,

I'm wondering whether your surgeon is considering the age of the patients and whether they have tonsils in his study. 45 years ago they routinely removed tonsils and adenoids so we obviously are not going to have tonsilar cancer. The reason I bring this up and it may be completely coincidental, is when I was diagnosed 7 years ago, I use to log onto the oral cancer forum on Compuserve. The most prevalent cancer in the H & N area seemed to be cancer of the thyroid and I don't remember very many of the tonsil. In the two years I have been on this forum, I don't remember any thyroid cancer. I think that now we are into an age group where most people did not have their tonsils out, the doctors will be seeing more cancers in that area.

Brian,
I think I remember Listerine as being the only mouthwash that did not have any alcohol.

Take care,
Eileen

I would like to comment that studies are now coming out that the use of multi-vitamins and/or the use of anti-oxidants ( vitamin C, E ) could have a role in some cancers for people that smoke. Beta-carotene has been proven to be a factor in causing lung cancer in smokers. Smokers taking this regimen should really take a look at the studies that have been done. I had a mild heart attack in "95" and started taking such a regimen because at the time the litature from the medical professions was positive that this was a good step to warding off a reoccurance. I could not give up the ciggarettes, and I choose to continue smoking at a decreased amount. Around 2000 is when a small white patch showed up on my tongue. It wasnt until 2003 that it turned into an ulcer that wasnt going away. As a part time smoker taking vitamin C, I believe this was the cause for my ateries to harden at a great rate and causing me to have a 5 by-pass two months before the cancer operation.If other members were on such a regimen as mine I would like to hear your story. Also I would like to add that this vitamin regimen may increase the risk of dying from cancer in male smokers. Male smokers who used multi-vitamins alone or in combination with other vitamins had a higher risk of dying from cancer than nonsmoking males who took vitamins.

Well that is very interesting. They told me not to take any vitamins once I was dx with cancer, but a month after radiation, they put me on a multivitamin, 500 mg Vit C 2x, 400 IU vit E 2x and Zinc Sulfate 220 to help the healing process. I have been taking those +B 50 fort he last 7 years. Now they are are saying that this causes cancer??

Eileen

I don't know all of the details of my doctor's study, but I am sure when he is done with it, it will be released and researched to the max. Generally, doctor's in the field don't release studies without a painstaking effort to insure the accuracy of the data and results. Don't know when he will release, but will keep you all informed as he mentions it to me. As to vitamins, I used multi, C, E, and aspirin treatments for the last 25 years. Don't think vitamins are a contributor to cancer anymore than steaks and seafood are. Natural vitamins are generally derived from food, such as soy beans and other basic foods. I'm certainly not an expert, but am sure my cancer was from tobacco and alcohol use with a possible contributing factor of lack of rest. I've heard some stories that sleep deprivation can be a contributing factor to cancer. Don't think that is a formal study, just a supposition as the mouthwash theory is. As far as the age of the patients, I don't really know, only that all of the head and neck patients over the last two years are in the data base and I know there is a mix of ages in that time period as I have seen a number of the patients during my treatments. The doctor just mentioned in passing what was happening with his study and I thought the mouthwash thing was interesting. Didn't realize it was an old theory with a history. We'll just have to wait and see what the official study has to say. And I have no idea when that will be. But as I mentioned, I'll keep my ears open and update the board as time goes on.

My sister in-law had an ENT give a second opinion after laser removal of a leukoplakia patch with a biopsy indicating dysplasia (at my insistence). The ENT brought up long-term use of cinnamon as another suspect. Has anyone heard of this? He claims that prolonged exposure to cinnamon as in chewing gum constantly in the mouth could be a contributor to oral cancer. I was interested in this, especially after chewing 2-3 packs a day for 10-15 years. It seems like something new every day.

Ed

Hi Eileen
I,m sure you are Okay to take your vitamin regimen
The results were pointing toward male smokers.I do not know if you have access to the American journal of Epidemiology Vol 152:149-162. I find it funny and disappointing that now some manufactures of multi-vitamins are making a multi with out the beta-carotene and calling it a smokers vitamin. remember that these are studies and not scientific research in a controlled environment. Im sure research will follow regarding this topic,keep your ears and eyes open.


Best regards to all and I wish everyone to live their life to the fullest.

One thing I did notice when this was going on inside my mouth, is that layers of skin inside my mouth were peeling and it would only be noticeable when I would wake up brush my teeth and go to work. At work or on the way to work this would happen.

Put the cigarettes down....take the money you would have spent on the cigarettes and put it in a savings account. It should not take long to have a nice vacation.

Hi mtnwmn:
The cigarettes, the Alcohol,the Vitamin regimen I was on are all out of my life. The reason I go on about the vitamins is because of the new studies coming out about them, the fact is if this becomes true, that to a smoker there is a risk to all types of cancer. My energy will be focused on going after the manufacture that I so religously took for the last 8 years of my life. and if all else fails hopefully the medical professions will be pro-active with their patients and give them the knowledge of what not to take if a person is smoking. I have noticed on some of your American Ads regarding FDA approved persciption drugs that at the end of the commercial the audience is informed if there is a risk to smoking and cancer while taking the medication. This is the direction I am going. I know this is all up hill and I may not get anywhere with it but I will be that much more knowledgeable about the use of these products they call anti-oxidants and antidotes that are claimed to ward off everything from hangovers to lung cancer. Concerns are mounting over the safety of these products which are classified as foods, and therefore undergo less rigorous testing than medicines.

Fourhits,

We have had many discussions about vitamins, supplements, etc., on this board and I am confident it will never end. As far as you say you will be spending your energy on going after the manufacturer of whatever you have been taking for the last years, is this your anger about having cancer and trying to find "blame". We all go through this at times and most move on, realizing that you will never isolate exactly one reason you have cancer. In your case, you know you smoked for years and this could certainly indicate something of a risk, as would the alcohol. But even without these, many people get cancer. You could spend the rest of your life identifying "causes" but truth be known, it is much more complex than any one thing "causing" it. If we avoided everything that any study has been shown could contribute to cancer, we would live in a bubble and never interact with anything from outside air to other people.

Ed

Fourhits. If you are going to quote studies on the boards, post the name of the study, the journal that it was published in, i.e. a peer reviewed journal, and the author and date. I disagree with much of what you have posted, but will withhold responding in detail until I have the opportunity to evaluate the actual articles. Without references no one reading your post can make a judgment as to the value of your opinion which you so strongly state. I will say at this point that I disagree with your premise that vitamins, and cartinoid food by-products sold as supplements were the causative factor in your developing cancer. There are plenty of published articles and current clinical trials going on right now that show the chemo protective benefits of many of the things you mention including beta-carotene. Arteriolosclerosis that you mention you have had to deal with (and me too) is highly linked to long-term diet, degree of aerobic exercise engaged in, and smoking, and less to supplements and smoking. You have not revealed much about your diet during your lifetime, or exercise habits, both the major contributors to arterial disease, which along with tobacco have a significantly greater and well documented causative impact than any over the counter supplement or vitamin taken for only a few years.

I do find it interesting that you say that in 2000 you had a noticeable tissue issue in your mouth, and it wasn't until sometime in 2003 when you had a actual sore appear. My first question to you is why did you not explore in 2000 (by seeing a doctor for an evaluation) what was clearly an unusual, not normal, and now obviously precancerous condition? Rather you let it go for 3 years, and continued to smoke during that period. Given the thousands of articles that have been published about tobacco, precancerous lesions, and finally the resulting cancer, I am curious why now you would prefer to put the blame on beta-carotene and a vitamin regime, which is only a co-factor in a few cancers, in a few studies, when the other indicators such as the continued use of tobacco which leads to tobacco carcinogenesis are more obvious and likely. Your progressive etiology follows to the letter, a typical tobacco related cancer. The issue of causes vs. cofactors is becoming well understood. All the things that you mention are co factors and not themselves actual causes. In almost all cases the application of Achem

I will follow up with articles, but not today or tomorrow. I will be painting my bedroom.


Greg

Might I remind you also that you hijacked Itwins thread and that this topic belongs in "Adjunctive Therapy".

And please read the rules about links.

I had a well meaning person at my church try to sell me noni juice last week - God help us!

Gary,

How much was it? Just kidding !

Ed

They don't give you a price - they just tell you that if you become a distributor in their multi level marketing scheme (scam) you can get yours for "free". AND get cured from cancer to boot!

Wow,
can't beat that, can you? Also, I've got this bridge you might want to buy in Brooklyn.
Leena

since this page has quite a bit about smoking on it, i thought i would ask this question, sometime ago I read that it didnt matter if you quit, because if you have smoked in your life, you may have probably already done the damage. is this true? I know all of the doctors say, that is not true that you can go back to almost a non smoker after quitting for several years. so what is the consensus on this one?

It's true. If you smoked for 25 years your risk of lung cancer is the same as if you never quit. 25 years seems to be the magic number. Quitting sooner may reduce the cancer risks but I haven't seen any data. And then there is the second hand smoke issue.

I only smoked for about 5 years and still got oral cancer.

My stepmother smoked for 25 years and had quit for quit a while before she was stricken and died from lung cancer (less than 6 months from date of Dx). The docs told me the type of lung cancer she had was typical of smokers.

What does improve is heart attack and stroke risk.

Stop slamming those mutagens and carcinogens!

Yes, but as you say, it is only cancer risk that stays the same, all the other nasty risks go down quickly. Also, I do think I right in saying that if you continue smoking after cancer treatment, your chances of recurrence go up.
On the other hand, I never smoked and got oral cancer. We are talking about percentages and risks here. All we can do is try to make the healthiest choices we can. - Now, I hope secondhand smoke does not cause cancer, my husband does not need to hear that, he already knows his smoking probably brought on a heart attack at a young age!

Leena