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#149338 05-09-2012 12:02 PM
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emilyp Offline OP
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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.


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
Joined: Jun 2007
Posts: 10,507
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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!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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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.


Carpe Diem!!
38, non-smoker, otherwise perfect health. Biopsy: 3/8/2012, SCC Dx Right Underside Tongue: 3/12/2012, Surgery: 4/11/2012 Partial Gloss + Neck Dissection to remove 29 nodes (all clear). No Rads or Chemo req'd. I believe my SCC was caused by product used in dental work.
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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.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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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

Last edited by Charm2017; 05-10-2012 09:07 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Dec 2011
Posts: 126
emilyp Offline OP
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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 smile. 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 - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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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



65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Dec 2011
Posts: 126
emilyp Offline OP
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Joined: Dec 2011
Posts: 126
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!


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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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, smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: May 2012
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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...


Carpe Diem!!
38, non-smoker, otherwise perfect health. Biopsy: 3/8/2012, SCC Dx Right Underside Tongue: 3/12/2012, Surgery: 4/11/2012 Partial Gloss + Neck Dissection to remove 29 nodes (all clear). No Rads or Chemo req'd. I believe my SCC was caused by product used in dental work.
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