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#124731 11-16-2010 03:04 PM
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I haven't quite figured out how to work this site but wanted to introduce myself. My name is Sandy but you can call me Sandeshells, or Sandy or anything you want actually. I live in sunny Florida. Most of my Dr's are in Gainesville but I live two and half hours from there. I go to a lot of Doctors because I have Fibromyalgia and other problems. Today however I went to the dentist and he told me I probably have mouth cancer. The only symptom I have are that my gums are white. I just happen to be going to my regular Dr on Friday, so will tell her what the dentist said and go from there. I am not sure then what will then happen. I really don't know what to expect, can anyone help me know what steps will be next? I haven't had the chance to look around yet and meet all of you, but am sorry that you too have had to go through all of this as well. My brother was sick with leukemia for years, and know that it's such a hard thing to deal with. My thoughts and prayers with you all. Thank you for any help you all might give me. Please be patient with my computer abilities to understand the site. Sandy

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Get to an ENT.

White gums can be many things but what you want to know is a definite answer. An ENT can give that to you. Many here went to many doctors before getting either good or bad news.

The defining answer will only come from a biopsy of the tissue. An ENT can do that for you and give you an answer you will be able to deal with.

Ask your Regular doctor to recommend a good ENT in your area if you can get that.

It's not cancer until a biopsy says it is.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #124733 11-16-2010 04:11 PM
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Hi Sandy,
I agree with Kelly. The quickest and best way is to get a referral to an ENT (hopefully someone who specialise in cancer) and get a biopsy.

Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
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Thanks so much, What does ENT stand for again? Also what does a biopsy feel like? Geez, I had one on my liver before and it was horrible. Thanks again.

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Some of my gums are white and it's not cancer. I had a CT Scan and PET Scan nothing showed up on my gums. ENT is Ears, Nose and Throat doctor. My biopsy didn't hurt they froze my tongue.


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.



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ENT is an acronym for an Ears, Nose & Throat doctor. The formal name is Otolaryngologists but they are also called "head and neck surgeons". Three different names, but same doctor.
It's true that the one and only way to know if it is cancer is to have a biopsy and then the pathologist can say for sure what it is. Let's hope it's not cancer.
Charm

Last edited by Charm2017; 11-16-2010 05:10 PM. 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
Charm2017 #124737 11-16-2010 05:31 PM
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Connie, thanks for that answer, that's encouraging. I don't know why I didn't know what a ENT Doctor was.. geez, I have gone to a real cute one for years. LOL

Thanks again for everyone responding... I guess now, I will just wait.

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Anyone know how long it will take from getting the biopsy to the results?


Charm, sounds like you're really having a hard time, my prayers and thoughts are with you.

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Sandy,

It can take up to two weeks to get a result. My doc was great and had his nurse call me within 72 hours (3 days) which I think is about the minimum time.

Good luck.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #124743 11-16-2010 07:55 PM
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Thanks so much Kelly. I bet that will be a long two weeks.

I like your little quote at the bottom of your page.

Blessings everyone~

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Sandy,

As with everyone else...go see an expert (ENT) and have a biopsy done which as said before is the ONLY way to tell if you have cancer or not.

When you've done that and gotten the results, either negative or positive...go back and kick your dentist in the sack for being an insensative, unprofessional dick. Nothing causes more mental/emotional trama then hearing the word cancer and your dentist should know this.

The saying on these forums is "it's NOT cancer until a BIOPSY says it is." so try to keep your mind from racing out of control. Even if it happens to be true, this forum is proof that it isn't the end of the world.

Oh, glad you found OCF, sorry you had to.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #124748 11-16-2010 09:16 PM
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It blows my mind that your dentist would tell you that you have cancer based solely upon seeing white areas on your gums. Did he/she suggest anything you should do about it?

You have been given good advice already and you should go to a competent dentist, oral surgeon or an ENT.

Remember it is impossible to diagnose cancer by looking.

Good luck and keep us posted.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
EricS #124749 11-16-2010 09:18 PM
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Thanks Eric and everyone, I also realized that he should of done more in checking things out at my appointment today. He also could of taken a biopsy as well. He referred me to someone who when I called, didn't take my type of problem. They had no idea why this Dentist referred me. He used a lot of big words and could of cared less that I didn't know what he was talking about. My mind has been racing out of control, like you said but am better tonight just from reading a lot of the posts here. Thanks so much Eric and everyone for being so supportive.

Last edited by sandeshells; 11-16-2010 09:19 PM.
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Hi Sandy, welcome to OCF. A biopsy usually takes a week for the results. Worrying wont change anything so try your best to stay busy to keep your mind off it. Ive had biopsies done by my oral surgeon or my ENT. Dentists usually dont do biopsies. A biopsy is the only way to tell for sure what is going on inside your mouth. If you dont have an appointment yet with an oral surgeon or and ENT, make one with a doctor who is familiar with oral cancer.

Ive had biopsies done where they knocked me out, one done where I had my mouth numbed and one done without anything. To be honest, it wasnt a big deal and being put to sleep wasnt necessary for me. Its usually a 3 visit procedure. First is the exam and consult where you decide how you want the biopsy done (awake or asleep). Second visit is the biopsy and third is the results.

Wishing you the best and hope that it turns out to be nothing.


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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He said I needed to be checked out because "I probably had tissue cancer". I really don't have many symptoms except that my gums are white, ear aches. On the referral note it said Leukoplakia. He said many times, that it doesn't look normal. I plan on calling my Ear Doctor tomorrow and see if he won't take a biopsy and if he doesn't do that, have a an appointment in Gainesville on Friday with my regular Dr. and will get a referral then. I think my Dr wasn't very professional from talking to you all and also my friends. I do feel better already. I knew it wasn't a "for sure" but the way he said it and the fact he didn't say it could be anything else at the time, I couldn't help but worry. Later I saw the word Leukoplakia on the referral paper. I haven't really looked into that much yet.
You, guys have been great in your support. I hope it's not serious but, if it is, I found a great support board. I didn't realize how so many people could have this and how important those regular check ups are at the dentist. Thanks again for everything.

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Thanks Christine, Wow, that was informative.. thanks.


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There is a search function on the forum and also on the main OCF pages. Please check it out. You will see that not all leukoplakia turns to cancer. How long has this been there? Anything longer than 2 weeks needs to be checked out.


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 #124758 11-16-2010 09:49 PM
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Christine, Actually I don't know. The light in my bathroom is very poor and can't see it at all. At the dentist office today he showed me using a bright light and a mirror and it looked as if my entire mouth was white where ever I had missing teeth. (missing a lot in the back)

Sounds like you have had a serious case ~ I am so sorry. I just never realized any of this could happen to people.. I feel so sad, not for me anymore but for all of you. I hope you're better now. I think I was in panic today but am so much better, thanks again everyone for your support.

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There is something called thrush which turns your mouth (especially your tongue) white. Thrush is uncomfortable, to some its painful. Oral cancer is usually a tumor, not just white all around your mouth. The real way to find out is to see another doc who is experienced with oral cancer.

Thanks for your compassion. Im doing ok. I am very very thankful for getting thru oral cancer 3 times and still being around to tell about it.

Im happy that you are calmer now about the situation. Getting upset only makes you feel bad, it isnt productive at all. This is exactly why I still hang around OCF, people like you who need help. Someone who is new and scared and doesnt know which way to turn. Everybody needs a hand sometimes. Please try to stay busy so you dont have time to worry.

Today was a scary day for you, tomorrow will be better. Now you know what needs to be done and that IF it would be cancer then you can get thru it.


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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Well umm I got an appointment for Monday with my Ear and throat Dr. Please recommend to new people not to look around this site. It's informative but scary. I am glad you're here but wish I hadn't gotten out of my own little thread. I was up all night last night reading and then some today. I don't think I could do anything you all have done. I suppose if I had people that loved me and a reason to go through hell but I don't. Scary stuff, Sandy

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Sandy

C'mon, Life is scary. Actually not having people who love you is much more scary than any oral cancer complication. Many theologians define "hell" as being deprived of LOVE. If you are surviving that, then even cancer TX should be a cakewalk for you (just my opinion not a fact)
I was puzzled when you posted that I'm having a "hard time". I'm doing just fine. It's not optimal not to be able to eat or drink but hardly the end of the world. At this point, you might not even have cancer. And I have to politely disagree: new people should look around and see that out of almost 7.000 members, most of them do just fine. And those of us who had it a little rougher are doing fine also.
Finally it's perfectly normal to be scared "s**tless" when you are waiting to see the ENT to see if you do have cancer.
TAke a deep breath (or a toke from a vaporizer like EricS) and like the very old song goes: Que Sera, Sera, Whatever will be, will be, the future's not ours to see, Que Sera, Sera.
Hope this is all just a false alarm for you.
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
Charm2017 #124799 11-17-2010 06:42 PM
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Charm, no wonder they call you charm... you're one tuff guy. A charm to know, I'm sure. Thanks for your support. I shouldn't say anything till I know one way or another. You guys are awesome.

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I will take on your wise words as well Charm. Some days i just need to be reminded too.

Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
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That's MY DOG Charm!!! Droppin it for real! And yes I did just vape laugh it's for my glaucoma... laugh



Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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