Emily, i know exactly as you feel, but i decided to do not drink again in my life. Yes, radical. I hate alcohol, drugs and smoking (and smokers that dont respect people) but i recognize your feeling.

We just feel limited and not so free.

Well, maybe i can drink a champagne after 10 years cancer free, but it will happer in 2021! Maybe we can "cheers" together!

I don't believe my cancer was caused by alcohol either, I think there is some factor out there that we have not discovered yet that is causing so many young people to get oral cancer. That being said, I see Cheryl's point that it might not be worth the risk. I don't think having a glass of wine or beer every now and then will make much difference, but I probably won't go out and get drunk (except on a very rare occasion). I just hate having so many limitations! The part of my tongue that wasn't removed has been killing me this last week, and I am terrified about what it could be. I am assuming it is probably just burned or irritated, but it still sucks having to fear every time something unusual goes on. I am going to see my oncologist on Monday so hopefully everything is ok!

Hi there... Just to clarify - I agree alcohol isn't, and wasn't a factor in my cancer or many others here.I know this in my case for certain because I don't drink AT ALL - i've have only had maybe three drinks in my entire life, I don't smoke - never have and don't do drugs. I'm also a vegan/ vegetarian - (I occasionally have an egg or cheese) that said - I wasn't trying to say that I believed drinking caused your or anyone elses oral cancer - though in the past heavy smokers and drinkers - were primarily the demographic for this cancer - what I should have explained is this... Lung cancer is caused by chronic irritation of the delicate lung tissue - over an extended period of time - exposure to chemicals and toxins in the tobacco, (or certain chemicals through work) causes cell change and damage, and cancer evolves. This is a fact. This also has ties to oral cancer because it is the same response to these same thngs that has in the past (as I said earlier) been the basis for this cancer.

Now I do think that long term chronic irritation to my tongue did cause a similar reaction (scc) I ran this by a few drs, and looked it up. Some believe long term (chronic) irritation can cause cancer, some don't. Frankly, they don't know. But since I don't have any other precursors for cancer - and I knowing how this lesion on my tongue progressed, it's a very plausible theory.- and supported by the fact that other cancers develop the same way - So now factor in, radiation to your oral mucosa, and all those sharp teeth, the chemicals you ingest normally, and then add alcohol? It's just another irritant to an already sensitive area. Moderation in anything is important of course, and a drink now and then may not do much but for me it's not worth it. I guess if I do end up facing a recurrence I want to be able to say - I have done what I can to try and prevent it rather than sit there wondering - should I have ?

As for the odds, I did some research and scared the crap out of myself when all this started.

What I got was this... Stage 1-2 - after 5 yrs with treatment 75-95 % survival rate - stage 3-4 after 5yrs, 35-65 %.

There were several studies I read. And those are ballpark figures, and you have to take into consideration the demographics involved since generally it's a melting pot. And what I mean by this it - since non HPV oral cancer - is generally considered an "old mans" cancer (heavy smokers heavy drinkers - often over the age of 60) you have to consider that there are likely other factors to consider that would impact on this number - overall health of the patient (preexisting conditions - liver disease, heart disease, arterial disease (all likely in older people particularly those that drink, and smoke) age and lifestyle all play a factor. As does the actual cancer itself - differentiation and tumor location, diet and outlook - and the care being received. (good dr, good hospital etc)

So the numbers are a crap shoot as the outcome is individual - based on your body, your habits, your age, the cancer and many other things... So bottom line as someone else here said, your chances are either 100% or 0% - (I think that as charm's quote so thanks - ) We've had stage I members, who are no longer with us, and stage IV who are NED.

So ideally - ask questions - do research - do what you can to shift your odds towards the 100% side, and that is where all this comes full circle and back to my original response to your question - why not give yourself the best chance? If there's even a possibility that drinking figures into a recurrence - or makes you a little more vulnerable... Then why take the chance?

Just food for thought people...

Have a great day.. Hugs!

Emily

I should clarify also that my doctor's approval for drinking a beer a night was BEFORE I had a G tube. This was during the actual radiation and chemo TX. My wife was there to verify that I was not making up the approval of my radiologist, my oncologist and my ENT surgeon. It's true none of them are well versed in nutrition, but they were quite aware of the dangers of aloohol for oral cancer. They just did not think it was a factor in my disease nor had they seen any studies that a beer or two put me at any greater risk. When I did my premature "Victory" tour to Rome & Venice with my wife, the glass of wine sipped on Plaza Navona or St. Mark's at a cafe watching the nighttime crowds was delicious.
IMO it just comes down to individual choices and personalities. When I first discovered OCF, I had several hot postings back and forth defending my enjoyment and use of alcohol and MJ. I have no objection to people being teetotalers whether from desire or alcoholism, but I will always object to blanket statements that a little drink or vape will cause a recurrence of oral cancer since they are only opinions. It is the classic Appollonian vs Dionysian debate. I always chose the CELEBRATE or Dionysian life style
On OCF, there's room for both voices, especially when one of them is as loud and stubborn as mine.
Have a drink for me
Charm

"I had no risk-factors, and was never that heavy of an alcohol (ETOH) drinker"

I'm sorry you have to go through this at such a young age; I'm 40 and was diagnosed at 38; which is still way too young in my book! From your initial statement you stated you didn't drink that much; so ETOH obviously was not the cause. FYI- I am always doubtful when I see someone so young as you with a HPV- test; I know the studies show that 7% can be non-HPV and get cancer young for some unkown predisposition. But I work in the medical field and know that the test is only as good as the person doing it! I almost two years out and I worried about the same thing; but decided that I needed to enjoy life too. No, you don't have to drink ETOH to have a good time; but it's nice just to be out and feel normal and not worry about cancer. I say enjoy life, but in moderation. Your not drinking it everyday; once or twice on the weekend is fine in my book. FYI-Guinness is only 4.3% ETOH; listerine is about 26%. You would have to do your oral care routine anyway regardless if you drank etoh or not!! In the end it's all up to you and if your going to blame yourself; but if having a drink makes you happier than I say have one. Afterall we went through the treatment to live life; not hide in a box and be afraid of our shadows!!!

Cheers!!

Charles

Hi Emily, so sorry to read about what you're going through at your age. And your point and others' about enjoying life is very well taken.

I was a lifelong lover of beer and good wine and I've given it up. My RO suggested I not drink ever again - maybe a glass of champagne on New Year's or my birthday - and my MO said that drinking in moderation was ok. I chose the former's advice.

You can go crazy thinking about this and as someone wrote, there are numerous threads here discussing it. I'd say go with your gut and as many good medical opinions as you can find. Mainly though I'd recommend that whatever you decide, don't overdo it.

Good luck. You sound like a brave person and we're all rooting for you!