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#193729 01-13-2017 04:05 PM
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BretB Offline OP
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Hello everyone. My name is Bret, and Im a 37 year old male from TN. Im a military/airline pilot, married 15 years with two young children. I have convinced myself (prematurely/unreasonably) that I have oral cancer on the base of my tongue, and I just need a place to vent. Hope thats OK...
I am a social drinker, although occasionally (once a month or so) I may over do it a little. I also am a tobacco user- a pack a week of cigarettes, and 1/3 pack a day of chewing tobacco. SO, if this turns out to be cancer, I know that Ive earned it. I do see my dentist twice a year, where they provide an oral cancer screen. Up until now, Ive always had excellent oral health.
Yesterday I was driving home and noticed the side of my tongue was a little sore as if I had bitten it perhaps. I stuck it out and looked at it in the rearview mirror. I was completely FREAKED out to see a small (<1cm) raised white bump/blister on the left side at the base of my tongue. Maybe slightly larger than a bb. I immediately called my family doctor and, instead of driving home I proceeded to my family practitioners walk-in clinic. The PA who examined me said that he wasnt sure what it was, so he set me up with an appt with an ENT next week.
So here I am on an airline trip, in my hotel for the night, doing the worst possible thing: scouring the internet for answers that arent there.
I havent discussed this yet with my wife, as I dont want to worry her until its necessary.
Im sorry for the long post, but Im frustrated. Frustrated at myself for being so selfish and stupid. Frustrated at having to wait for a diagnosis, and scared for what that diagnosis may reveal.

Thank you for allowing me to post here.

Bret

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Hello Bret and welcome to OCF. There are a lot of people here with a lot of experience that will be responding to you shortly. You may want to stop beating up on yourself and you most certainly are not stupid.

The really good thing you have going for you is that you have been getting screened for OC every six months. So if it is cancer, and it may well not be, you have caught it at an early stage.

There is a lot of junk on the internet that will make you nuts. My doctor told me to stay away from it. At this site you will find people and caretakers that have firsthand experience with OC and genuinely want to help others.

Don't get too far ahead of yourself until you get a diagnosis. You are doing the right thing by being proactive and seeing your doctor right away.

If it is any comfort to you, just know that I was diagnosed at stage 4 with tumors on my tongue, neck and lymph node. I had 2 months of treatment with radiation and Chemo and am now cancer free, 6 months after being diagnosed.

It's not easy but it is doable and it is treatable. Relax and try not to worry. Keep us up to date on how things work out.

Ed


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
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Bret, welcome to OCF! I hope you do not need our site but if you would we are here to help you.

First... dont get too far ahead of yourself. At this point you only just noticed the spot. If a sore has been present for 2 weeks or longer and it does not heal on its own then its time to get it checked by a professional. That would be an ENT who specializes in treating oral cancer patients. Next Im going to be the bad guy who tells you to eliminate the alcohol and tobacco immediately. You want to give the spot time to heal on its own without all the irritants/poisons from both smoking or chewing tobacco and alcohol is a major irritant. Getting rid of these things will hopefully help the sore to heal. Maybe this could be the start of a new healthier lifestyle free from alcohol and tobacco. Eventually anyone who uses tobacco (in any form) will find some type of health problem that was caused by tobacco. Why risk it? I am speaking from experience!!! I smoked (not heavy but for many years), now Im disfigured, missing half my lower jaw, can barley eat and endured more medical treatments/surgeries/procedures than any patient should. Im thrilled to still be here and able to help others but I definitely have many limitations and daily struggles. Let this be your wake up call to do the right thing, if not for yourself, do it for your family.

If the spot is still there after 2 weeks, seek out a biopsy from an ENT who specializes in treating oral cancer patients. Some ENTs primarily put tubes in kids ears, you do NOT want that type of ENT.

All this will be alot of hurry up and wait. Its likely to take you several weeks until you know what you are dealing with. Those few weeks wont make much of a difference if it would be cancerous. It would be a few more weeks until any treatment started. But thats all IF you actually do have cancer, which odds are you do not. Base of tongue cancer does not include tumors on the side of your tongue. The base of your tongue is way down deep in your throat hidden from your view. Having a thorough oral cancer screening every 6 months should catch any irregularities early enough to make it easy to treat, IF you do have cancer.

Hopefully this is not anything serious!!! Wishing you all the very best with everything. Please stop back and let us know how you make out. Best wishes!!!





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
Joined: Jan 2017
Posts: 4
BretB Offline OP
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Ed and Christine, thank you for your words. Judging by your signatures, youve both had incredible and harrowing experiences with oral cancer, and Im happy your both doing well.

Ive known for a long time that I need to stop using tobacco, and this is the wake up call that I needed. Trust me, Im done with it. I come from a long line of tobacco users, all of whom lived long lives, and none of whom ever suffered from oral or lung cancers, so I thought (here it comes:) it would never happen to me. Especially at a young age. So I have just put off quitting year after year. Now that I can see right in front of me the potential impact it could have on my life, my wife and children, and my flying career, it makes me sick to even consider continuing its use.

As for the alcohol, thats gonna be a little tougher. I am not an alcoholic. I can easily go days or a week without a drop, and I dont drink much liquor. But boy, I sure do love to have a good beer or two when the mood strikes. I cant imagine life without beer. I will do my best to abstain though, at least until my mouth heals.

I do have a couple questions.

1) Are you suggesting that I give this "spot" time to clear up on its own before I see an ENT? I do already have an appt on Weds the 18th with a cancer treating ENT.

2) Any thoughts on when I should bring my wife into the loop? I dont keep health secrets from her, although up until his point Ive never really had any to keep. My plan is to see what the ENT says on Weds, and take it from there. If he/she (the ENT) cuts into my tongue for a biopsy, obviously I'll have no choice but to 'fess up. My hope is that I get an "all clear" and this can just be my little secret...

I know that worrying about this is doing me no good. I know Im way ahead of myself. However, in spite of the fact that I know these things, Im finding it very hard not to obsess about it. Ive just never had a scare like this.

Thank you again for listening to me. Hopefully Im all worked up over nothing.

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Im going to be completely open and honest with you. I apologize if I sound a bit stern, it is not intended that way at all. I want to help educate you about risk taking behaviors that can lead to oral cancer and other serious health conditions. Every year we have so many new members join our group due to tobacco and alcohol. This is avoidable by making healthy life style choices.

Here is some info you may find helpful from our main OCF site. It explains about the 2 week "rule" of allowing the sore time to heal on its own. Having a spot, sore, lump, etc in your mouth does not automatically mean its anything cancerous. There are more noncancerous spots/sores someone could have in their mouth than the cancerous type. Abstaining from tobacco and alcohol is often all mouth sores/spots need to heal on their own. As Im sure you already know, stress and anxiety do NOT help your situation either. Try to stay super busy to help the time pass quicker. If you have an appointment only a couple days away, its ok to keep it and get checked. Just make sure you explain about only recently discovering the spot.

As far as bringing your wife into the loop, thats up to you. Think about it this way... how would you feel if she kept a potentially serious condition from you? You know your wife better than anyone but, most spouses are very supportive when a medical scare happens. Most marriages deal with problems together using teamwork and supporting each other. People will often surprise you with how they respond to this type of thing. This very well may turn out to be nothing serious.

As far as if you are able to enjoy a beer here and there down the road, that's a conversation between you, your wife and your physician. Patients who drink alcohol run a much higher risk of getting oral cancer or some other serious medical condition. At least give your mouth a break by avoiding alcohol until you know exactly whats going on in your mouth. Heres a link below explaining it further. Get all the info you can about the impact alcohol could have on your health and form a game plan for what works best for you.

I added a link about tobacco at the end of this reply as well. As I mentioned earlier, tobacco is what caused my cancer. Ive been thru years of serious medical conditions, treatments, recoveries all because of making bad choices. While Im still alive, I make it a point to educate children at schools and all adults I encounter to be smarter than I was and eliminate permanently all forms of tobacco from their lives. Maybe a photo would help to better understand why I am such an anti-tobacco advocate? Do a quick Google search by typing Oral Cancer Foundation, Christine and then view the images. Maybe that will help you to understand just how serious problems tobacco can cause. Dont get fooled by the e-cigs or vaping. Those are not any better, they're owned by the big tobacco companies and contain known cancer causing ingredients as well. The average oral cancer patient is male, over 50 with a long history of smoking and drinking. Please do your best to make a couple changes so you wont fit into these statistics!!!

Wishing you all the very best, good luck!!!

Main OCF Site --- Alcohol and oral cancer

OCF Main Stie -- Tobacco Connection


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
Joined: Jan 2017
Posts: 4
BretB Offline OP
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Christine-

Again, thank you for your advice. I am very appreciative of it, and I am taking it to heart. I will provide an update just as soon as I have one. And thank you for letting me get this concern off of my chest via posting. By posting here and reading your responses, my nerves have been calmed greatly.

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Best of luck Bret! I agree with Christine that you should keep your appointment. If I had just ignored that little lump in my neck things could have only gotten worse.

I quit smoking 19 years ago and was never a heavy smoker. I was, however, a pretty steady drinker. Not so much when I was your age but as I got older it became a daily routine. Even though I quit 5 years ago the damage was already done. I am sure that's how I developed OC.

So as you can see, a life without smoking or drinking will keep your chances of a healthier life considerably higher. Believe it or not, I don't miss either one!

Only you can answer the question of whether to tell your wife or not. As a man our first instinct is to protect them and then there's the macho factor where we can tough it out solo no matter what. I can only tell you that I let my wife know right from the beginning and she was there for me all the way through. We are closer now than at any other time in our 40 years together. I am really blessed.

Good luck and keep us informed.

Ed


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
Joined: Jan 2017
Posts: 4
BretB Offline OP
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Well, I just got back from the ENT, and this was what he had to say:

He sees nothing in my mouth or throat that concerns or looks troubling to him. (Side note-as of today the sore is nothing more than a small bump, no "white", and barely noticeable) His opinion is that it was an infected or irritated tastebud that had become pus-filled. He said that his philosophy when it comes to weird bumps in the mouth are to cut it out and get it biopsied, regardless of whether he thinks its benign or not. So thats what I'm gonna do.

May I say that I am tobacco free for 5 days now, and its FINALLY getting to be tolerable. Its that damn routine that gets you. Those times in your day when you'd normally put in a chew or have a smoke. Quitting cold-turkey sucks, but I don't want to substitute one vice for another. I'm determined not to touch the stuff again, so I'll just take it one day at a time.

I feel silly that I was freaking out to you guys -REAL SURVIVORS- over something so trivial, but I want to give you my sincerest thanks for helping me chill out. My biggest fear has been your reality. I have been, and will continue praying for your continued healing and recovery.

If anything changes, I will let you know.

Very Respectfully,

Bret

Last edited by BretB; 01-18-2017 07:32 AM.
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Glad to hear nothing serious. Glad to hear you decided to stop tobacco. Take care.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Thank you for checking back with your results, Bret!!! Not everyone who gets good news returns to share it with us. Im very happy your check up went so well smile

Its perfectly natural to get upset and worry when facing a potentially life threatening illness. No apologies are necessary!!! We are here to help those who need support and info about oral cancer. If you hadnt taken that first step to join our group and make your posts, you would not have stopped using tobacco. Im very glad you took this scare and let it become your wake-up call to the dangers of tobacco. Congrats on your "spot" being nothing serious and I applaud your efforts and success in becoming a non-smoker smile


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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