I am almost 4 months out of radiation, and my life has somewhat returned to normal. I am very fortunate that I was able to keep my job and move back to my old apartment. Eating has gradually gotten easier, and I am extremely thankful for everything in my life.
I had no risk-factors, and was never that heavy of an alcohol drinker. Now that I am (hopefully)on the "other side" of cancer, I have been completely avoiding alcohol, as I know it is a major cancer catalyst. It is upsetting sometimes, because I am only 25 years old and I feel like I can never just cut loose and have fun anymore. I have had a single beer on a couple different occasions, but the entire time I was drinking them all I could think about was that it was not worth it and if the cancer came back I would have myself to blame. Aside from that, I know that if I did go out and drink, I would still have to come home and do my regular routine of brushing, flossing, flouride trays, meds, etc. I know all of this stuff isn't difficult and does not take time, but it is still in the back of my mind as a responsibility. Does anyone else feel like this? Also, does anyone know if it is ok to drink every now and then? I know these concerns may sound silly, I know how lucky I am to have survived this disease, but when I am 25 and the majority of my friends still go out to bars and have fun all the time, sometimes I just feel completely on the outside and like I don't really fit in anymore.

I cant imagine being 25 years old and have had to go thru oral cancer and its treatments. Your age should have helped make it easier for you to bounce back. I think the whole thing is just too fresh in your mind that you are afraid of a recurrence. With time you should be able to relax and not worry so much about it coming back. Cancer can act like a thief and steal your time away from you. Instead of going out and enjoying life, you are wasting time worrying about things you have no control over. It takes practice but you can zone out the worry and put it out of your mind and go out and live your life.

The drinking topic has been discussed several times on the forum. Most patients have doctors who tell them its ok in moderation. So what does in moderation really mean? My guess would be its ok to have a beer or 2 once or twice a month or two. I would avoid the hard liquor completely. No reason you cant go out to bars with your friends and have a good time. You just need to be careful and limit yourself. You dont have to get hammered to have a good time with your friends.

My situation is different, I am one who has had oral cancer 3 times. I know if it would come back I probably would not live thru it. I avoid alcohol, beer, wine, everything! Only once since my original diagnosis did I have 2 sips of a pina coloda. That was over a year ago. I choose to not drink at all even though I still have a feeding tube that I could pour it down if I wanted to.

You are young, go have fun!!!!

I'm 38 and my docs told me that a few drinks here and there won't hurt me. Between my diagnosis and my surgery, though, I stopped drinking completely but since my surgery, I have had a couple, once my docs gave me the ok. With radiation and chemo, things might be different, though... I would certainly ask.

My doctor told me the same thing, but I am afraid to drink at this point. I have two bottles of wine that are three years old, and have never been opened. I still manage to go out and have fun, however, and I'm almost 66 years old, but I don't consider my life over by any means. Sure, I wish that I could crack open one of those bottles of wine, but I am so grateful that I am still alive, that most of the time I can get beyond this.

Emily

Have you asked your doctors? Mine were fine with a beer a day during my first radiation Treatment (it cooled my throat, pumped up the Percocet, added calories, and washed down that food since I did not have a PEG). i pushed to get a definite answer: one beer? two beers? one wine? etc. They said to avoid ALL HARD drinks but thought one beer or one wine were fine and unlikely to trigger a recurrence.
We have had some heavy discussions here at the forum on drinking but no resolution to the issue. (Hey does that make it Moot? - inside joke to don't you just hate it thread)
Seriously, on an issue this important, you need to first ask your doctors. Ironically, many OCF members who insist on some positions because that's what their doctor did or said, just ignore their doctor's okay to have one beer.
Personally, I still put wine down my feeding tube each night at dinner or happy hour and always order wine when out at a restaurant (makes the waiter happy since I'm bringing my Jevity cans for food).
If nothing else, have you thought about the non-alcholic beer many bars have.?
Charm

Thanks for the advice, I haven't asked my doctor about it yet, I mostly just read stuff online (a terrible thing to do, I know). I haven't tried non-alcoholic beer, it seems to defeat the point of drinking . I have had a beer here and there, but I am just thinking in my head worst case scenarios every time I try to drink any. I know I am so fortunate to have been able to bounce back to quickly - I am back to eating just about everything, my energy level is almost back to normal, and my speech has improved greatly - so I just hate to push it. But, at the same time, it is still a bummer! I hate when I go out in public and friends/acquaintances ask me if I can drink, and then when I say no they ask me why not. If I give them an honest answer - that it is a cancer catalyst and my chances of recurrence are still 50/50 - it makes people pretty uncomfortable and puts a damper on the mood. I feel like people for the most part don't realize how big of a risk there is for recurrence - they see that I look normal now, so they assume the cancer is gone and I am done with it forever. I know I wouldn't have known any better had I not gotten cancer, but it is still frustrating.
Sorry, I am just venting! I feel guilty even worrying about such insignificant matters as drinking, considering everything I have been through, but at the same time I still want to have some sliver of my normal self/life, and don't want people feeling like they have to walk on egg shells around me and feel sorry for me all the time. I do like to take the edge off by vaporizing some MJ, but that doesn't put me in the most social mood!

Emily

Vent away! One of the nicest things about the OCF forum is that here you can say all these thoughts and fears. We all empathize and understand your desire to "have a sliver of my normal self/life". I'm not sure where you got your 50/50 chance of having a recurrence but that strikes me as very high. At your age and considering your diagnosis & TX, IMO your odds are much better than that on keeping the cancer in remission or NED (no evidence of disease).
I've never been a fan of non alcoholic beer myself for the same reason you gave - just did not see the point. Also Remember that most mouthwashes are manufactured with an average 26% alcohol content. Beer has only 4 to 6%. My understanding is that anything over 20% alcohol is a definite no no in any amount.
Too bad we don't have the same set up as the Netherlands where there are "coffee" houses with vaporizers for MJ that recreate the social aspects of a bar with alcohol. (they are closing those down to tourists this January). One coping technique might be to volunteer to be the "designated driver" for your friends since that reason is accepted by almost everyone and would not trigger pity or sorrow or discomfort when you give that as the reason not to be drinking. But again, just ask the doctor. I really think he or she will give you the green light for a little social drinking.
There are no guarantees and many people on OCF have had recurrences who never drank any alcohol after their DX. If only it were that simple to keep oral cancer from coming back.
Charm

The 50/50 chance is just from reading articles online... I know goolging is terrible to do but I usually will google odds and stuff with the intention of finding some information that will make me feel better, but in the end it always just makes me feel worse! My parents like to be very involved in every aspect of my cancer... it gets pretty old... but I never feel comfortable asking the doctor questions like what are my chances of recurrence, because I try not to upset them and don't want them to think I am depressed or anything. I have finally moved back to Atlanta though, away from my parents, so I will have a chance to go to doctors appointments by myself now and ask them questions that are really on my mind. Not that anyone knows whether you will have a recurrence!
As far as the mouthwash, I did switch to non-alcoholic mouthwash immediately after my diagnosis. So I have been conscious of what I eat and drink... unfortunately it still has not stopped me from eating sugar, but I love sweets and will take the risk! I try to stay away from processed foods, though. I have become pretty much a hypochondriac since this whole cancer thing, so hopefully if it ever does come back I will be able to catch it quick!

Hi there - I'm going to do what I always do - play devil's advocate. First off there's a difference between putting it down a feeding tube where it doesn't come in contact with your oral mucosa, and drinking it. I know that recurrence is always a possibility - no matter what you do there is a possibility of it coming back - so why possibly tilt the odds out of your favor. For for years people were allowed to smoke etc... Causing lung cancer in themselves and others, drs never told them to stop because there was no evidence that it caused cancer... they didn't know. Try asking your dr. About nutrition or physio, they know what they know and what they've been told in Medical school, but the profession is always changing, science is always evolving. And new theories are being formed, so bottom line they don't know for sure, you can ask 3 different drs and get three different answers. So why risk it ?

Sorry I know you're young and a someone who doesn't drink even for pleasure and never has, I just don't get the draw... And I certainly don't think it's a worth risking the possibility of a recurrence over. Hugs,

I can't speak for anyone who is or has been undergoing chemo and/or rads (because I haven't) but personally I asked every doctor who saw me, both at Charleston ENT and my team of doctors at Hollings Cancer Center and they all gave me the green light in moderation. My mom is French so I very much enjoy a glass of good red wine on occasion. For me personally I do not believe alcohol played a role in my SCC and my docs all agree. I know some SCC survivors who have never smoked or imbibed, lifelong healthy eaters with great oral health (except for their OC), no genetic factors or HPV... yet mysteriously they had SCC. It doesn't add up & I don't believe that moderate alcohol consumption, on its own, has been determined as a cause of this type of cancer... at least I have not seen, heard about or read conclusive evidence to that effect...

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!