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#26014 11-30-2003 11:24 AM
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shelley Offline OP
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I noticed an ulcer in the back of my throat this past summer when I had a cold and was checking my throat to see if I had any indication of strep throat. When I went to the doctor he too told me I had an ucler, but didn't do anything else to investigate it any further. After seeing three more doctors (all of whom told me not to worry, but to come back if it wasn't gone in two weeks) I finally made an appt with my dentist. He too said it didn't look like anything to worry about (he said his own dad has throat cancer and that this didn't look anything his dads did), so he told me to come back in two weeks if it didn't heal. I was beginning to think I was nuts as I really don't think half the doctors or my dentist actually saw what I was seeing as the dentist even said he noticed the red patch, when in fact, it's white, it is an ucler. Three weeks ago I went to the ER for vomiting blood (I had spit some up a few days before vomiting it)where an endoscopy was done. The biopsies from it came back normal. When I went to the gastroenterologist for the follow up appt and test results, I asked him if he noticed the ucler in my throat and he said no, that he looks further down inside, so he didn't see it either. I was diagnosed with grade II esaphagitis, gastritis and a sliding hiatal hernia, which he said is probably what caused the bleeding. I was given a medicine for this and after taking it for two weeks and still seeing no improvement in the ulcer in my throat, I went back once again to my dentist. this time he said he couldn't see it (I think he only said he could the first time to appease me), so he gave me a mirror to see if I could look in it and then point out to him where it was, which I did. It isn't visible when I stick my tongue out which is probably why he and the doctors never could see what I was talking about. He did see it this time and told me that since I was a previous drinker and smoker that he would call an oral surgeon that same day and put in a referral for me. He told me that he would biopsy it when I go in. He told me that it was probably nothing to worry about, BUT.....that if it is cancer, it would be good to catch it early. Needless to say, I am very upset, at both all the doctors and my dentist who I had seen in the past about it, and at myself for not being more persistent. I am terrified about the biopsy and I'm tired of waiting and worrying. Everything I've read online paints a dismal picture. I've had this ulcer since early July and have fear that if it is cancer, that it's spread since then. I've also had night sweats (both day and night) where I sweat profusely and then get cold chills right afterward. My doctors told me these were signs of menopause. I'm 48 years old, have smoked for over thirty years, and used to drink heavy. I'm also afraid of how they will do the biopsy, as my dentist told me that because of where the ucler is, they may have to put me completely to sleep to get to it. I cannot even swallow a pill and am petrified of the thought of a tube being inserted into my throat. When I was in for vomiting the blood the doctor tried to insert a tube down thru my nose into my stomach to suction out the blood and he said I couldn't have any sedation while doing this. After two tries and my tearing the tube out, they gave up, admitted me and then sedated me the next morning and did the endoscopy. Right now I am so afraid that I almost want to ignore it and pretend it's not even there, as crazy as that sounds. Because if it is cancer, because of the fact that it's been there for five months (and maybe even longer) I'm afraid it's spread and I feel hopeless. So, if anyone out there has something to make me feel more hopeful, please let me know.

#26015 11-30-2003 08:21 PM
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Hello Shelley, Welcome. Try not to worry for now, the report after the biopsy is tough to wait for. If it turns out to be cancer you have a great resource here. It may be of some comfort to know that many of us went for several months until proper diagnosis. While it is better to get an early diagnosis, you will still have a fighting chance (assuming it is cancer)

The biopsy procedure is usually not a big deal.

For now imagine that it is one of the many other things that aren't cancer.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#26016 12-01-2003 06:56 AM
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Dear Mark, thank you for your reply and kind words of encouragement. I went to another doctor today and she said she couldn't see anything unusual, but she said she would put in a referral with an ENT doctor if I wanted. YES.....PLEASE do! It's so exasperating when I KNOW there's something there that shouldn't be there and the doctors can't see it. One doctor and my dentist do see it, so I know Im not crazy. In the meantime the oral surgeon my dentist told me to see for a biopsy, called today and made me an appt for the biopsy for the 11th of this month. I was told not to eat before it and to make sure I have a driver with me as I'll be sedated for the procedure. I'm not sure if our insurance will cover this oral surgeon though, so if the ENT doctor calls with an appt before the oral surgeons, I'll go with him. If not, then I'll pay whatever it costs, when it comes to our health, no amount of money is too much to pay. I'm praying that everything will turn out fine, and if it does, I'll still be very thankful for finding this website, it's made me a lot more aware of the dangers that come from smoking and drinking, and it's given me a lot more compassion for people who are fighting cancer. I was amazed at how young you and a lot of the other people on this site are, and blown away at how strong and courageous and positive most of you seem to be. You're all in my prayers....Shelley

#26017 12-01-2003 07:24 AM
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Hi Shelley,

A suggestion if your insurance doesn't cover your oral surgeon...

My health insurance wouldn't cover my oral surgeon, he wasn't a member of the network. The benefits rep in the human resources department where I work called our dental insurance and was able to verify it would be covered by them. So if one doesn't work, try the other! Like you, I was willing to pay my oral surgeon myself if I had to just to get it taken care by someone my dentist highly recommended.

Hope all goes well for you.

Sincerely,
Lisa


Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
#26018 12-01-2003 12:48 PM
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Dear Lisa, thank you for your reply and info about the insurance. My husband is going to try to call our insurance (tricare prime...retired military dependant here) to see what they have to say. I'm confused about which specialist is best to see? An ENT surgeon or an oral surgeon? Who do the majority of folks go to with this? and what kind of specialist does the surgery if needed? I've a million questions rolling around in my brain, but I'm trying to keep a positive attitude at the same time. My sister got upset with me when I told her I came onto this website. Her way of dealing with things is to ignore them until she does have a sure answer. Guess I'm not like her, as I'd rather be prepared for the worst, and then if I get the best, it makes it all that much sweeter. And like I said, reading about all you people in this forum have been thru and still keeping such an upbeat attitude makes me feel better. You are all amazing in my opinion. You're all in my thoughts and prayers now too. Shelley

#26019 12-02-2003 01:16 AM
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An ENT or Head & Neck surgeon at a comprehensive cancer center is your best bet.
See http://www.nccn.org/

I had an experienced dentist, oral surgeon and family doctor misdiagnose me. I paid out of pocket for the ENT for my original Dx.

If it IS cancer, early detection is critical. The lower the staging the higher the surivability.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#26020 12-02-2003 04:55 AM
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Hey Gary, thanks for the info...I noticed there are a few hospitals in Ohio, which is where both my husbands and my families live. One of them is even doing a few trials. I still haven't heard back from the ENT doctor here for my appt....was told if they didn't call by friday to give them a call. This waiting sure isn't easy. But at least I found someone (my dentist) who finally could see what I have seen all along. I was beginning to wonder if I wasn't crazy?! I did have to laugh when the oral surgeon who set up an appt for me told me to make sure I brought a driver as I'd be drugged up when I leave. My husband said he'd go with me, I said that will be like the blind leading the blind home.....he recently lost his vision in his left eye due to a pituitary adenoma, will be going in for his seventh surgery soon....a cranitomy, but the good news is this type of tumor is not cancerous. When it rains, it pours, my sister in law is being checked for bladder cancer this week, and my mom is having surgery tomorrow. And I wonder why I'm losing what little is left of my mind?!! One good thing about it all is that you learn not to sweat the small stuff! have a good day! shelley

#26021 12-02-2003 05:12 AM
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shelley Offline OP
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Well, I just got a call from the military doctor, but it was an oral surgeon and not an ENT like the doctor told me she was going to refer me to. They told me to go in tomorrow and at this point I'll take whatever comes soonest...if the biopsy isn't good, then I will be more choosey with who I see, for now though, I just want an answer to my worries. Shelley

#26022 12-02-2003 08:37 AM
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Hi Shelley,
When they biopsied me they sprayed a topical anesthetic in the area and took out 2 small snips with a scissor like instrument. There was some very minor and tolerable pain afterwards for a few days. No big deal. My tumor was 6cm x 3cm and readily visible (it was protruding into the back of my throat - actually choking me, making it even more strange that 3 health care professionals couldn't figure out what it was -this being the reason I have just a little passion about going to the most qualified doctor. My family doctor took the time honored "process of elimination" route which costs time and staging. The ENT took one look and knew immediately what it was. In all fairness to the doctors, I had my own denial issues going on also.

Not knowing or seeing your "region of interest" (ROI) I don't know what is involved in your biopsy or why they would suggest general anesthesia but at least least you won't feel anything ;-) The last time I has anesthesia at an oral surgeon they gave me and IV of sodium pentathol which knocked me out for quite a while - you should have a designated driver if that's what they give you.

Welcome to the "...little is left of my mind club" I think that we are all there to one degree or another (just ask my wife LOL). Don't forget that eventually the rain has to stop and the sunshine will come out again.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#26023 12-02-2003 11:44 AM
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Hi Shelly,

When I had the tumor on the larnyx, they knocked me out because that was the only way they could get to it. It was hiding in a fold. The procedure is no big deal. They put in an IV, wheel you into OR, give you the anesthesia, and a half hour later you are in recovery. You will need a driver or they won't do the procedure. I was a little groggy for a few hours, but otherwise had so other side effects.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#26024 12-02-2003 03:36 PM
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shelley Offline OP
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Hi Eileen, I don't know the names of the parts of the throat or where they are, but from looking at pictures online I think mine is on the soft palate, off to the right side of the uvula (that thing that hangs down?). It looks like it's behind a fold too and that's why the dentist said they missed it before, because you can't see it when I stick my tongue out. In order to get anyone to see it, I have to hold a mirror and move my tongue over to the side. Did they remove a lot of your tumor in the biopsy? Also, how does it not bleed afterward? Did you have to wait to eat long after they did the biopsy? Is it normal for biopsy reports to take two weeks to get back? that's how long they told me it would take to get mine back. Which if that's the case, these next two weeks are going to be hell. to say I'm terrified is an understatement. Just thinking about it makes me want to throw up. Did you have other symptoms too or did someone see your tumor when it was found? I had a bad cold that wouldn't go away this past july and it was then that I saw the ulcer, how long it may have been there before that, I've no idea. It's never been sore, I've not lost any weight, felt fine up until about three weeks ago when I spit up some blood and then threw up quite abit a few days later, which landed me in the hospital. For some reason, they never checked my throat out for the bleeding, only my esaphagus and stomach. Chest xrays came back normal, thank God, as did the ones of the stomach. The scope showed esaphagitis, gastritis and a hital hernia. Since then I've given up all bad vises.....smoking, drinking, even caffeine and spicy foods. Now I'm so afraid and angry (at who I don't know?) that I'm wondering why I'm depriving myself, as crazy as that sounds! I almost wish I'd never have seen the darned thing, but reading you guys posts in this site make it seem like it must be possible (if it is cancer) to move on and find happiness in your lives again. I've been obsessing over this the past week since the dentist did say he finally could see it.....I hope I get over that as it's not only making myself miserable, but also my entire family! Anyway, sorry for rambling, but when I get nervous I tend to go on and on and on! take care....shelley

#26025 12-02-2003 06:50 PM
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Shelly,

The biopsy sample is sometimes taken with a little snip, or a little punch tool to remove a small round sample. Your Dr. may have other ways. Depending on how it is done a stitch may be placed to close up the wound. The process shouldn't cause much if any pain.
To be sure, everybody here is hoping that you do not have cancer and in fact there are lots of things that aren't cancer. Please tell your family that if you find out it is not "C" then you can breathe a BIG sigh of relief and be happy that it got you to quit tobbacco use. The reality is that more than a few people here were mis-diagnosed or put off by Medical Pro's that didn't take things seriously. Oral cancers are relatively easy to cure if found early. I hope that you can find a way to keep your anxiety at bay. Ask your doctor if there is any way they can speed up the report after the biopsy. I got my results back in 36 hours. Tell him/her how much stress you feel. As to other symptoms, there are frequently no symptoms! The first symptom I had was an enlarged painless lymph node.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#26026 12-02-2003 07:19 PM
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Hi Shelley,
Yes there is life after DX and Tx! About the biopsy, mine did bleed a little afterwards but no big deal. I was able to eat later that day. Your results may differ due to many variables. Like Mark, it took my HMO 3 days to process and deliver the biopsy report.

Speaking for all of us, I can tell you that we know your terror and exactly how you are feeling. The early pre definitive diagnosis phase is very frightening. When they told me, I passed out in the ENT's office. You can really drive yourself crazy worrying about it. I asked for and got anti-anxiety medications which helped me a lot in the beginning -tell your doctor about how you are feeling.

It is good that you have stopped your vices (I won't give up salsa though). Let this be a wake up call to the real dangers of tobacco and alcohol.

I was a practicing alcoholic until 8 years ago and stopped smoking in 1976 (pot in 1985). I quit coffee when I started treatment earlier this year and now only drink an occasional cup. Life is great without these things and I can only imagine how much worse things might have been if I hadn't quit when I did. AA gave me a strong spiritual foundation and well as other practical tools to deal with it also.

The experience turned out to not be as bad as I thought and in fact, I'm doing pretty well now. I don't think I would want to go through it again but I would have been dead already without the treatment.

Like Mark said also there are many reasons other than cancer for problems in the head and neck. It is a very complex area of the body. Keep a positive attitude - it will keep your immune system healthy and continuing the fight.

We are here for you...


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#26027 12-03-2003 05:57 AM
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Mark and Gary, thank you for helping me feel abit less anxious. I can't say it enough how much all of you guys amaze me. It makes me feel bad for boo-hooing about myself when I'm not even sure yet what my problem is, and there all of you are, having gone thru so much and are still able to find happiness and joy in your lives. That really makes me feel better! I think I may ask for an anxiety drug. I've always been a nervous person, but would never take the drugs the doctors gave me for anxiety because I was drinking and didn't want to mix them with the booze. I spent time in detox a year and a half ago, only to have a relapse, and then gave it up again after spending the night in the hospital last month. Amazing how fear alone can make a person give up bad vises. I really was clueless about throat cancer until I came into this website. I always worried about lung cancer (have to have chest xrays taken yearly because I have granulomas and have tested positive for tb (altho never had it) one time in my life. But I never even gave throat cancer a thought...because I was ignorant about it all until I came onto this website. I'm just so thankful for finding it now. I'm working on getting my son to quit his chewing and drinking now. He's diabetic too, so it's been a real worry for me. Anyway, I need to get ready for my appt now.....altho the nurse who scheduled it said the oral surgeon would just do a look see today and will biopsy it another day. Wish me luck! Take care and thanks again so very, very much for making me realize that life is worth fighting for and living and there is a light at the end of any tunnel, no matter what the diagnosis! Shelley

#26028 12-03-2003 08:32 AM
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Hi Shelly,

If you noticed in my signature, I have had cancer twice, two spearate incidents 4 years apart. The only symptom I had the first time was a small lump in my neck. Being a smoker/drinker, I wasn't about to ignore it. I found the second one when I swallowed a large vitamin pill and it hurt. Considering my history, I thought it might bear checking out.

The first cancer they biopsied the entire tumor, the second cancer they only took a piece. Both times they knew if was cancer within the hour, but the detailed reports took a few days. That is why I went to the hospital to have the biopsy because needle biopsy in the office took two weeks to get the results. See if you can't push to get some kind of results sooner.

Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#26029 12-03-2003 11:11 AM
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Shelley,
you need to get yourself to an AA meeting and get into the program. You have been given the gift of a "convincer", now its up to you what you are going to do with it. This is just a suggestion. It may save your life.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#26030 12-03-2003 02:20 PM
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shelley Offline OP
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Well, I saw the base oral surgeon today and was not exactly happy about the appt. He seemed to do a pretty thorough examination, but he said he could not see the area I was talking about (which in my defense, my dentist and one other doctor have seen it too). He said he could see that an area in my throat was red and irritated, but he said that was due to my past smoking. Told me to come back to him in two weeks for him to check it again then to see if it hasn't gotten better? Said none of my lymph nodes were swollen and that that was almost always a sure way to know if something was going on. I felt like screaming and crying both....I am NOT imagining this ulcerated area, it's just in such a darned difficult spot to see. So.....I'm still going to go to see the other oral surgeon that my dentist recommended. My dentist said he is who taught him, so since he (the dentist) did see the ulcer last visit, he can at least tell this oral surgeon exactly where it is. I was hoping to at least feel some relief, but I still feel very unsettled. I know this other oral surgeon will do a biopsy though as my dentist called him and told him about it and they've already informed me not to eat or drink after midnight the night before and to bring someone with me to drive me home. So, I guess it's six more days of waiting. Gary, you are right about the AA too, I need to get my butt back there. I had a seizure (that they never did find out what from) which is what landed me in detox in the first place (about a year and a half ago). I then went to four or six weeks of an intensive outpatient program. The real kicker here is that my husband is a computer networker for anheuser-busch! He brings home two (free) cases of beer a month, which was my drink of choice, I never drank hard liquor, but had to have my beer. I think the drinking was masking all my stomach and Lord knows what other problems I had as it wasn't until I did quit this last time that I started feeling like crap in general with heartburn and reflux. I don't mean to sound like I'm putting down military doctors either, but every one of them that i've seen for this ulcer, have told me to definately not use tobacco products again, but, that it would be okay to have a glass or two of wine a night....hellooooo......recovering alcoholic here!! I really don't think any of them look into my med records or listen to half of what I tell them. On the up side, my husband made it thru his MRI without freaking out with claustrophobia (will get results in a week), and my mom made it thru her surgery.....so for tonight I will be counting my many blessings and asking the Lord to bless and watch over all of you on this website. Take care all. Shelley

#26031 12-03-2003 09:30 PM
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Shelley,
you're in good company here. There are a fair amount of us alcy's here. I was a beeraholic myself -ever since I had an alcoholic form of hepatitus back in the 70's and the docs told me I "...could drink or I could live" (I blamed it on hard liquor and switched to beer - after a tough, white knuckle year of healing passed). Normies can have their glass of wine a night -we can get by very nicely (with the same benefit) with a glass of grape juice. After you've been around the program for a while you can be around people who drink without the temptation. I am a musician and play in bars a lot. I don't miss alcohol anymore. Remember that most normies are clueless about the disease of alcoholism.

Self medicating and not taking prescribed medications and/or having seizures (I have seen many alcoholics in detox having seizures) could be signs of problem drinking (only you know for sure).

It would make me a little more nervous that the oral surgeon is going to biopsy something that he can't visualize. Stage I and II cancers typically don't have lymph node involvement. Mine was stage III/IV and I had no lymph node involvement (although this is not typical) so his knowledge on oral cancer makes me even more nervous. Can you get insurance thru Anheiser Busch and go to an ENT or head surgeon?

Don't freak out too much about the time delay. Almost two months passed from my initial Dx to when treatment started and they expedited all of the scans and tests that I needed.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#26032 12-04-2003 06:01 AM
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Hi Gary, Man, you sure deserve a lot of credit for being able to stay clean with your being a musician in bars (what instrument do you play?). Alcoholism is a disease that most people who don't have cannot understand. Even my dad (who smoked for about forty years and drank A LOT of beer for years, until he was diagnosed with emphazema and had two heart attacks) then quit smoking but still has three beers a night, doesn't understand it. Of course, back in the day, he would down at least a 12 pack a night followed by a few shots of something. because it never interferred with his job (he waited to have his first til after he got home from work and then didn't stop til he'd go to bed), but we never thought of it as alcholism because of this. At my worst I'd drink seven or eight beers on some nights, and a 12 pack on others. Always followed by a sleep med....whatever i could get my hands on, be it valuim, codeine, or just over the counter night time sleep aides. Because I was almost always in a drug induced state, I never stopped to think clearly about what I was doing to my body. Until I landed in detox, and then it only lasted for a short while before I thought I could handle just having a few beers a night...hah....that didn't work! Even when I'd go to my doc for check ups then he'd tell me that one beer was okay....two was pushing it and three was too much for my size and weight. Now, how stupid is that...telling an alcoholic that "one is okay"?! Not that it's their fault that I did drink, but you'd like to think that doctors would be a little more up with this disease. As for insurance with anheuser-busch, we don't have it, just have the military retired insurance, tricare prime. And we've had our share of ignorant military doctors over the years. When my husbands brain tumor came back one time his doctor didn't even inform him about it. It was only when my husband went back to him for a complete different thing that he (my husband) was leafing thru his records and saw the MRI report hiself!! I wonder how long we would have went if he hadn't of seen it? His tumor is not malignant (thank God) but it is dangerous as it grows fast and without removing it he could end up completely blind (he's already lost the vision in his left eye) or dead. He's had six surgeries already and is going to be having another one soon. Anyway, this other oral surgeon I'm going to on the 11th is not military, and hopefully, he will be able to see the ulcer. If he can't then I'll demand to see an ENT doctor, I am not going to sit still until I get an answer that I'm satisfied with. I imagine the two months you had to wait after being diagnosed and starting your treatment had to be pure hell for you? We're you even able to eat? I worry about that, as when I am nervous I can't eat and I read where so many of you guys online lost a lot of weight. I only weigh 118 pounds now as it is. Also I'm wondering, do you have a lot of scarring, do you look like you did before the surgery? I read where some of the surgeries can really change your appearance? Okay, enough of my rambling for now....have a good day! shelley

#26033 12-04-2003 08:45 AM
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Shelley,
I can't comment on surgery as I had radiation and chemotherapy only. You don't have a diagnosis yet so you getting a little ahead of yourself. As a recovering alcoholic you must always be on the watch for the old "magic, magnifying mind" thing. Stay in the now - the future is not yours anyway. You may have a very mild pre-cancerous or even benign problem. So try to relax and enjoy each day as you wait for ALL of the information. In AA one of the definitons of fear is False Evidence Appearing Real.

I play Fender Bass, sing lead vocals and I have been toodling with my vintage Hammond B3/122 Leslie also. I work mainly with blues/rock bands. To counter this, I also play on my churches Wednesday night worship team and occasionally on the Sunday programming team.

Alcoholism only affects 20% of us so that means the rest are normies and mostly clueless. You'll get used to that. AA is a great place to vent about that.

When alcoholism runs in the family it places the family members in an even more vulnerable/susceptible position. Not only do you have AA issues but also Al-Anon, ACA and a healthy dose of CODA as well. AA by itself may not be enough, in the long haul, to address all of your recovery issues but if it puts "the plug in the jug" that's a great start.

My higher power gets all the credit. All I have to do is suit up and show up for meetings, work the steps, read the Big Book, share with/serve others and be accountable to a sponsor.

I ate like a pig during the 2 months prior to treatment knowing full well that the radiation and chemo would wipe out my taste buds temporarily and that there would be swallowing difficulties and weight loss issues.

The phase you are in was worse than when I had all of the diagnostics completed. I delayed emotional response to it all by becoming a cancer student, as it were, so I could be a more effective advocate for myself. I had to make many critical decisions in a short period of time concerning treatment options, etc. so I didn't have time to freak out. Plus AA has given me a great toolkit to "live life on life's terms" so I kept my balance pretty well throughout all of it. I was prescribed ani-anxiety meds from the beginning and took them as prescribed. They helped a lot to get past the rough spots.

And more about your dad. Most people in the program today are what we call "high functioning alcoholics". The hold their jobs, stay married, hold on to their property, many never had a DUI, police problems or been in an institution. In many ways it makes the disease look less recognizable.

Remember only YOU can take the first drink. Not your doctor or anyone else can force you. The solution is simple -DON'T TAKE THE FIRST DRINK! Blaming people, situations and institutions for your drinking is a form of denial. Alcoholism is only a symptom of the problem. In AA we say "I am the problem".

Is it too late to get insurance through Busch? If it were me I wouldn't want the military health care system treating me (I am a Vietnam Veteran by the way -I could have gone to the VA for treatment) -especially based on the information that you have shared. You don't really have a pre-existing condition yet so maybe there is still time. If you are "stuck" in the military health care system, can you shop for more competent doctors within the system?


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#26034 12-04-2003 02:52 PM
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Gary, thanks for knocking some sense into me. I do have a way of getting myself all worked up over something that (like you said) I'm not even sure of. Instead of freaking out, I should be enjoying my health as it is now, as I do feel pretty good aside from occasional heartburn and these darned night sweats that i get both day and night. I think some of my irrational thoughts are coming from the fact that I've pretty much stopped all my bad habits cold turkey and so close to the same time. I was drinking heavy for about five years (although I started at the tender age of about 13) and smoked for over thirty years. I think I need to start some sort of exercise program and go to the AA meetings. Keep myself more busy and enjoy my life. I do have a lot of to be thankful for. If I'm not satisfied with the oral surgeon I see on the 11th, I can ask for a different military doctor. Or maybe even ask for a referral for an ENT off base if they don't have one on this base. Have a good night. Shelley

#26035 12-10-2003 09:06 AM
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I go in for a biopsy tomorrow morning with an oral surgeon. I read online where you should let your doctor know if you've been taking sucralfate two months before any type of surgery or before you have anesthesia. I've been taking it for gastro problems, and i was wondering if anyone else knows anything about this? I stopped taking it two days ago and let the doctors nurse know, but she said she didn't know anything about it? Told me to be there and an IV will be ready for me. I'm hoping this is as easy as most of you say it was for you. I know, the hardest part is going to be the waiting for results, and I plan on letting the surgeon know just how stressed out I am as it is. (my husband goes in for a cranitomy for his tumor the 15th of jan.). I've already made another appt with an ENT doctor in case I'm not satisfied with the oral surgeon. Although they couldn't get me in until Jan. 6th. Hope all of you are doing as well as can be and that you all enjoy the holidays. My prayers go out for you all....Shelley

#26036 12-10-2003 08:30 PM
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Oh shelly, Take 1 deep breath......Let it out slowly.... Take one more deep breath....


I hope and pray that this is as easy as we have said.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#26037 01-31-2004 06:21 PM
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Okay Mark......I'm still trying to get an answer to my worries and symptoms. Saw the second oral surgeon who said all he could see was normal lymph tissue, but he did refer me to an ENT surgeon, (because of my long history of smoking and alcohol abuse) who I see this Tuesday. My husband made it thru his surgery with flying colors and is making a fast recovery, thank God. Since I saw the last oral surgeon I've noticed two white patches on my tonsil, which have me concerned. Okay.....more then concerned.....I'm very worried about them. So.....I'm hoping this doctor will do a biopsy and that it will be as easy as you say. I feel like I'm driving myself insane and my husband right along with me..although he thinks I'm already crazy to be thinking the way I do anyway....I just hope he's right! Hope you're doing well...Shelley

#26038 02-03-2004 04:01 PM
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I went to my ENT appt with a doctor at Barnes hospital in St louis today,and after viewing my throat with a lit magnifying glass, he told me that all he can see is a broken blood vessel in my throat (I'm wondering if this isn't what caused me to vomit blood this past december?), and cysts on my tonsils. He said that he didn't even feel the need to do a biopsy, that he looks into a lot of throats each day and that the white spots I'm seeing are NOT what cancer looks like. He did tell me that if they get larger that I could one day have my tonsils removed. I felt like kissing this man and then dancing my way out of his office! Over the past 7 months I have seen about 6 different general practioners (comes with having insurance thru (retired) military, my dentist, two oral surgeons and the ENT surgeon I saw today, and although one of the g.p.'s and my dentist showed concern, I am finally accepting what all the others have said, that I am OKAY. I'm tired of looking into my throat a dozen times a day, losing sleep and imagining the worst. My sister told me that I'm wasting my time thinking I'm dying when I should be spending it "enjoying living". Which is what amazes me and puts me in awe of all of you on this site.....I only "thought" I had cancer, here all of you are who do have it (or people you love with it), and yet you continue to fight it and live and hope and enjoy your lives. In all honesty, and I'm not proud to say this, but I don't know that I could be as brave and upbeat as most of you seem to be. You blow me away and I admire each and every one of you. I'm also a strong believer in the power of prayer and I'm keeping you all in my prayers. Thanks for being here for me when I needed advice and a good ear to hear me out. Shelley

#26039 02-03-2004 05:52 PM
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That's GREAT news Shelley -we like to hear good news around here! But DON'T start your bad habits back up just because you can. Oral cancer is greatly influenced by alcohol & tobacco. Even though the problems you are having are not cancerous, they do reflect an abmormal throat and I would be very careful. An adult tonsillectomy is no walk in the park either.

We'd much rather have you as a visitor than a member.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#26040 02-03-2004 05:53 PM
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Thank you for the update Shelley! And a good one at that. laugh laugh laugh

Thank you for thinking of us as well.

Let your sister know that we all just wanted to be sure. Bottle that feeling you got when you heard the good news and save it for a rainy day.

Take care and stay in touch.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#26041 02-04-2004 03:06 PM
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Shelley, I am very happy for you and want to thank you for posting your good news. This has not been a good winter around this forum, and we need every ray of sunshine we can find. I don't want to preach, but please listen to Gary and maintain your no smoke/no drink status at all costs. Either behavior can cause oral cancer, but together, they are way more than twice as bad. Now go dance in the streets!

#26042 02-05-2004 07:01 AM
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shelley Offline OP
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Dear Joanna, Mark and Gary, thank you very much for your kind responses. It's people like you who make this world so much brighter and better to live in. You're all in my prayers. Shelley

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