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#140061 09-16-2011 08:54 AM
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Hi everyone,
I should start out by saying that I have not been diagnosed with oral cancer. I am just very concerned about it.

I chewed tobacco (Dip) since college and am now 39. After years of trying and succeeding for a time, then failing, I finally quit a year ago. I used to dip on the bottom of my mouth, but when I had an issue with gum recession about 8 years ago, I moved to the top since I had no success quitting.

Anyway, in the last few months, I have noticed a small (about 2 or 3 mm) normally pigmented oval outline (not even a "bump" really) over one tooth and a little bit of a soft movable "extra gum" which is also normally pigmented over the next tooth (again, pretty small), in the area where I put the tobacco. I find myself looking at the area constantly.

I went to the dentist, who said it was nothing to worry about. I also saw two oral surgeons, who saw nothing to be concerned with and said they are just normal things that go on, but gave me no explanation why I would have these two new (I think) changes in my mouth in the area where I dipped. One, who looked at it very quickly, said about the one spot, "it is a gland" but it doesn't look like a gland to me. I asked if they thought I should have a biopsy and they both said no. I have an appointment on the 27th with a guy here in Philly who seems to be the best diagnostician around.

My wife thinks I am nuts not to just trust the oral surgeons, and really doesn't want to hear it anymore but after reading a lot here and elsewhere, I don't think I am being nuts at all (in her defense, this is not the first time I have been concerned about an area that turned out to be benign). I guess my question is how much I should push for a biopsy? At least a brush biopsy? I guess if 3 well-respected oral surgeons see nothing to be concerned with, I need to accept that and move on (while still doing monthly self-examinations), right?

I just don't want to be the guy who doesnt' press it and then find out a year or two from now that I really should have.

I have two little kids and I need to be as careful as I can.

I am sorry if I maybe shoudln't be posting here since I haven't even been told to have a biopsy but I have been so impressed by the people on these boards and this stress has been making me so uncomfortable, that I thought it would ok to ask.

Thanks for any advice.

Brian

Brian0703 #140064 09-16-2011 09:28 AM
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hi brian
I personaly think your doing the right thing keeping aware of your oral health. I had my "sore" when i went to my gp and was told to see a dentist in oct. well the next day i had to go to florida and off we went. the sore got bigger and more sore so i finaly got it checked out in april. now looking back i wished i had gone to the dentist. so i say be pro active not only in your oral health but your overall health. listen to your doctors thats what your paying them for. pat


dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
patrick2128 #140069 09-16-2011 02:10 PM
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Brain,

Put your mind at ease go to the Dr. in Philly. What I've read on here about brush biopsy I wouldn't go that way.

It's your mouth and it's your life.

Hope all turns out for you.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



ConnieFL #140071 09-16-2011 02:42 PM
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Brian, welcome to OCF. I hope you do not need to be here. First get rid of the tobacco, NOW!!!! I hope this scare has been a real eye opener for you. Stop tempting fate and throw the stuff away and never go back. You have 2 little ones to take care of, oral cancer is a very deadly disease. Im a former smoker, always thought it couldnt happen to me. When I was diagnosed with OC, I threw the cigs away and never smoked again. Please think of the people in your life who are near and dear to you and quit using tobacco so you can be around for them.

A brush biopsy is not as exact as a regular biopsy. Any sore in your mouth that has been there for longer than 2 weeks should be checked. Since you have continued to irritate your mouth with tobacco the sores have not had a chance to heal. I would push to get a regular biopsy done, thats the only way you will know for sure if its cancer. Hope its not the case but if it is, you are in the right place for help.

Good luck!!!!


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
ChristineB #140074 09-16-2011 03:14 PM
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Thanks for the responses. Christine, I did quit the dip about a year ago. I will never go back. I tried quitting for a long time before it finally stuck.

Having oral surgeons telling me it is "nothing" hasn't really made me feel much better about things since it seems that all I have read on the internet is how hard it is to visually tell early cancer from other little changes and read horror stories of dentists and oral surgeons misdiagnosing what turned out to be cancer.

I admittedly have a bit of a phobia about this due to the dipping and I think most people would have just accepted the visual inspection from a dentist and two oral surgeons already, but I am going to this next doc and am going to explain to him how concerned I am and make sure he sees exactly that I am talking about.

If they truly don't see an area to biopsy, most docs won't just do one to calm my nerves, will they?

Brian0703 #140075 09-16-2011 03:48 PM
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Brian, Im so glad you have quit using it. Congrats!!!! I know quitting isnt easy.

Visually, doctors can suspect its cancer or its nothing to worry about. The only way to tell for certain is a biopsy. If there is nothing there then they wouldnt have anything to biopsy.

RELAX!!!! At this point you do not have cancer. I hope that this remains the case. I know its so difficult not to worry when you are waiting to find out. Try to stay busy to keep your mind off worrying. Also there is so much false info out there online that maybe it would be a good plan to avoid research until you know for sure.

Have a great weekend!!!!


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
ChristineB #140088 09-16-2011 07:23 PM
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Hi Brian, I would agree with Christine. Keep yourself busy and take good care of yourself.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
Eshwar N #140089 09-16-2011 08:23 PM
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I think you should see the dr in Philly. If he says you're okay accept it but definitely check the area weekly just to make sure it doesn't progress. Sometimes drs miss stuff. You know your body best. If something is abnormal make sure you push until you get an answer! My first biopsy was negative. The dr. said the area under my tongue was all red - he didn't know where to take. Sample from there was an internal lump there just no visible sore. That biopsy was negative - the one I had in Dec was not. Dr.s are knowledgeable but not foolproof. So just keep an eye out. Take care and hope you don't have to be here!

Last edited by ChristineB; 09-17-2011 08:59 AM.

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
Cheryld #140106 09-17-2011 06:46 AM
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Where is this spot? It sounds like a "spot" I found on my upper gum, but I felt the other side and noticed it was there too. I talked with my oral surgeon that was my primary cancer doc, he said they are just palpable and noticeable because of the radiation and recession of my gums.
Not saying that is exactly what you have going on, but maybe it's the same for you!
If the one in Philly says that it's nothing, then you can maybe find comfort, but do you know any of the stats with this doc in philly? Like if he has treated anyone with oral cancer before, or how many and what kinds?
I saw a dentist and an oral surgeon for 5 months, and they had both seen OC before, just not in anyone so young, and they kept insisting it couldn't be until the biopsy proved them wrong.
Best thing is to advocate for yourself, as sometimes, you are the only one that will. But if the doc in Philly has a bunch of experience with OC, and says not to worry, then that is up to you if you trust what they say and just find comfort, or what you do after that!

I wish you luck, and hope it's not cancer!

Last edited by ChristineB; 09-17-2011 08:57 AM.

25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
bethers0808 #140305 09-20-2011 07:47 AM
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Hi Bethers, This spot is very small above the second tooth from the front. It is right on the edge of what looks like a bone that goes across my front four teeth under the gum. I have to wipe off my gums to see it and it looks like an oval, about 2 or 3 mm. It doesn't really look raised and it is not discolored...it is a few milimeters above the tooth. There is no oval isn't on the other side, but the bone goes to that same spot there.

On the next tooth, there seem to be some irregularties, but both oral surgeons saw them and said they are nothing at all to be concerned with and are in everyone's mouths.

This all started for me last December when my tongue started feeling irritated on the one side. I went to an oral surgeon and ENT and ultimately a CCC to get it looked at (and part, finally biopsied at my insistence and "for peace of mind" by the ENT-I even had to show them where to biopsy-ended up basically being nothing) and all agreed that there was nothing to worry about at that time.

At that point, I became a little obsessed and look at my mouth daily. When I see something, I look at it like 10 times a day until it is gone. This spot that I am concerned with now, I noticed a while ago. It does not really seem to be growing, but isn't going anywhere either.

The guy I have my appointment with in Philly (I know I can't share names here) is at a major cancer center, rated very high, and he has a lot of experience with cancer and oral pathology from what I understand (and has been in practice for a long time). Doing some research, I saw where he was rated the top doc in oral pathology by other doctors in the area. The nurse there said he is fantastic, so I have to assume he will either just tell me there is nothing to worry about, or will do the appropriate tests. I know he is part of the team that diagnoses and treats pathology, including cancer and has been for a long time. i just want to feel like I am being taken seriously and want to know when I walk out of there that someone with a lot f experience who is looking specifically for cancer looked at that spot and took the appropriate action. That is all I can do.

Nothing I have in my mouth looks like any pictures I have seen of cancer, but from everything I have read, it is something to be checked (this could have been there for a while without being noticed because I wasn't in the practice of wiping my gums off to look at them). It could (and hopefully is) just me being overly sensitive and careful, but I want to take charge of my health and not have something growing because I assumed it was nothing. I know from reading these boards that one doctor isn't always right.

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