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#27990 03-09-2006 02:37 AM
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Linda L Offline OP
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Hi, I've been on the internet trying to find out more about this condition my periodontist says I have. After a biopsy over a week ago, he says that I have pre-cancerous cells and wants me to go to an oral surgeon for a second biopsy. The diagnosis is his words is "Hyperkeratosis with mild to moderate epithelial dysplasia. Dysplasia is present at the margins."

My husband has been a smoker his entire life, I have never smoked. I do drink an occasional beer or glass of wine. I am wondering if use of sacharine (like sweet-n-low) could be the culprit. I guess I'm feeling like I don't deserve this.

I suppose I'll go to that oral surgeon, but health insurance & money is a big problem right now since I'm unemployed. Comments and suggestions are welcome.

Thanks.

#27991 03-09-2006 04:33 AM
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It happens....I went through radiation therapy with a young man, never smoked, but was told that he may have come into contact with a carcinagen while working in a chemical plant as a younger man.
Who knows, what causes cancer? Nobody, for sure,,,
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#27992 03-09-2006 04:35 AM
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We come into contact with so many different chemicals and combinations of chemicals on a daily basis.
I think that if you get through life without encountering cancer in some form, you are lucky....
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#27993 03-09-2006 05:22 AM
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Linda L Offline OP
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How would you define the word "pre-cancerous"?

My Periodontist said it meant you could have cancer but you don't yet. In my mind, that would mean everybody (that doesn't already have cancer) is pre-cancerous since they don't have cancer yet but could. What is the difference?

#27994 03-09-2006 04:25 PM
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Linda,
Believe me when I say that no one, not a smoker nor a nonsmoker, deserves this cancer. It is a myth that only smokers develop oral cancer, and, IMHO, I feel it's coming to light that the number of smokers with this cancer are fewer then expected. There is lots coming out concerning the HPV virus being the cause. So, lose the thoughts about deserving a cancer, no one does but many of us get it.
Sounds like what your doc is saying is that you have abnormal cells that need to be watched. Have it looked at and monitored and let us know what the oral surgeon says.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#27995 03-09-2006 04:32 PM
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After his surgery Bob was told he still had some displasia at the margins. The way it was explained to us is that the cells are abnormal but not cancer abnormal. They could develop into cancerous cells or they can just stay displasiac which is what they consider a precancerous condition versus "normal cells". It does not mean you going to develop cancer but there is greater likely hood.
In Bob's case because he actually had cancerous cells removed surgically he was give the choice to watch and wait being carefully monitored or do radiation. If I understand your situation correctly you should be checked on a very regular basis to determine if there are any changes to the displasia.
This is just a curious question and you don't have to answer but have you ever tested positive for HPV virus? There are studies researching a possible link between HPV and squamous cell cancers (oral and cervical). As Darrell said there is no definitive answer to why me?
The things they attribute to causing cancers are only risk factors identified that seem to increase your chances but not every smoker gets cancer and some seriously health conscious people develop unlikely problems.
Here's to your displasiac cells staying happy to be a little abnormal and may they not aspire to anything more.
Peace Denise


Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
#27996 03-09-2006 06:48 PM
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Then general term of dysplasia is as simple as a cell, (or even an organ) which is not normal. However, when oncologists refer to dysplastic cells, they are comparing them to surrounding cells of the same type. No cell goes from normal to malignant without a variety of in-between transformations. These alterations of various components of the cell make it dysplastic. Some alterations are more ominous than others, an enlarged nucleus for instance is very characteristic of cells that are malignant, while other changes a few in the mitochondria, would qualify as dysplastic but not necessarily one of the changes commonly seen in cells in transition to full blown malignancy. Daughter cells produced as these dysplastic cells replicate need further genetic alteration to finally become a malignant cell. One of the most common characteristics of malignant cells besides the enlarged nucleus is the lack of p-53 which is the gene that causes natural apoptosis, or programmed cell death. One commonality in cancer cells is that they are (without p-53) essentially immortal. So while dysplasia is a general term, on a cellular level there are different dysplasias - some of greater concern than others. Of course one of the great mysteries is why some dysplastic cells go on to further changes and others do not.

As to cause, few will ever know for sure. In oral cancers, non-smokers exposed to second hand smoke for long periods would raise an eyebrow, ditto HPV 16 or 18 positive cells. But in the development of malignancy, without the introduction of a known causative agent such as the 400 carcinogens produced in tobacco combustion, we are essentially clueless. In some cases we are still guessing. The recent loss of Reeve to lung cancer is being discussed heavily, and the


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#27997 03-10-2006 09:24 AM
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Brian
Thank you for the real deal explaination.
It really helps make the process all the more clear.
Peace Denise


Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
#27998 03-10-2006 06:48 PM
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That was the "Readers Digest" version. If you really want to know about the transformation process and the genetics of cancer here is the link to the page in the main body of the OCF web site that I researched and put together (with significant help, and permission to use parts of other's material) four years ago. http://www.oralcancerfoundation.org/facts/cancer_genetics.htm

It's more than you'll ever want to know......


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#27999 03-15-2006 07:57 AM
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Linda L Offline OP
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OK, I went to the oral surgeon today. I took the written report from my periodontist to the oral surgeon. First thing, he went right for my mouth and did not look me in the eye and introduce himself to me. That always ticks me off.

He took a look in my mouth and asked me if I sucked on lozenges a lot. I said not much, maybe one or two a day and I was talking about those starlight mints, not lozenges with medicine in them. Him and his nurse laughed and said that was a lot. I said you got to be kidding, I know people who suck on them all day long.

He went in another room and called my Periodontist on the phone & I listened to his side of the conversation. He told the periodontist about my "so-called excessive use of lozenges".

Then he came back in the room and told me to cut out the sucking on lozenges. I got mad and told him that one or two mints a day wasn't a problem and that was just an estimate anyway, many days I don't have any at all. Then I told him how "jerked around" I was feeling since the other doctor told me I might have cancer and then he was telling me it was all because of mints.

Anyway, I let them set me up an appointment in two weeks for another biopsy, but I'm thinking about cancelling the whole thing. At this point, I really do feel "jerked around" by doctors and I feel like just dropping the whole matter. But, what if it is really something serious wrong?

#28000 03-15-2006 02:34 PM
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Linda,

I can understand how you would become discouraged by the way you were treated. However, if you are not comfortable with this doctor, find another one. Absolutely do not push this aside. Do yourself a huge favor and get it checked out.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#28001 03-15-2006 03:09 PM
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Hi Linda,

It's hard to believe that an oral surgeon acting as yours did would be able to maintain a practice. What an insensitive jerk.

Speaking as a dentist, I would highly recommend that you find another oral surgeon and get your self checked out to be sure. I would let your periodontist know how upset you are with the oral surgeon and ask him for another referral. He must use more than one.

Good luck and let us know how you make out.

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"
#28002 03-15-2006 05:32 PM
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I agree. To tell you after an ASSUMPTION, not based on anything other than a quick look see, is unacceptable. You may not have anything seriously wrong. But this guy wouldn't have any way of knowing. Get a new refferal and if necessary get it yourself outside the loop of the dentist that you are cuurently seeing.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#28003 03-16-2006 03:46 PM
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Please do not let this doctor's ineffeciancy turn you away from seeking more information. A large part of my brother's problem was denial. It's the natural thing to want to push it to the back of your mind and not worry about it. I recently found out my brother was told he had precancerous areas in his mouth when he was 18 - his solution? He never went to the dentist again, until they removed his teeth to begin radiation. Talk about denial. They may be nothing, but stay on top of it, now and with regular checkups in the future no matter what the outcome. It's better to be safe than sorry. As for feeling it isn't deserved...my brother did a lot of things "wrong", he chewed tobacco from the age of 2 (my parents thought it was cute), he drank alot of beer, he did not have regular dental checkups, etc. He literally did almost EVERYTHING on the check list of what can cause oral cancer, but all that said, he didn't deserve this disease. I say that not to imply he shouldn't be responsible for his actions and decisions, but because this is such a painful, devastating, horrific disease. Although I have only been around a couple of different kind of cancer, this has got to be one of the most vicious ones out there. No one deserves even a day of this disease. Of course I understand your frustration. I've said this before, but sometimes I have to remind myself, it rains on the just and the unjust alike. Please take care of yourself while this is just a little shower and not a full blown storm.
Best of luck,
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#28004 03-21-2006 09:54 AM
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Linda,
Hello. I have been through tongue cancer twice & no one asked me anything about sucking on lozenges(or peppermint). What was the resoning behind his assessment or do you know?
I also have several peppermints a day on the average but have never thought at all of that as being any kind of cancer causing thing. Please get another opinion.
Good luck!
Elizabeth

#28005 03-21-2006 11:49 AM
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Linda L Offline OP
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I cancelled my next appointment with that oral surgeon but have not made any arrangements to get the biopsy done by anybody else yet. I know I need to do that, but keep putting it off.

#28006 03-21-2006 04:26 PM
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Don't put it off. The earliest possible diagnosis of what the situation actually is will yield the best end results. Do not let this bad experience or fear of the possibilities prevent you from moving forward. You have to get on the phone and make this happen.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#28007 03-22-2006 04:29 PM
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Linda,

Please, please, please do not put this off. I had several biopsies over many years showing dysplastic cells. I always had the areas removed, and it always came back "pre-cancerous". The last time it came back, I was pregnant and didn't want to bother with it. My last doctor had been an idiot (thought it was caused by biting my tongue....funny how it was nowhere near any teeth). I convinced myself it was the same old, same old, and would be a non-event.

If I would have dealt with it right away, it may have been dysplastic still. But, I let it go and by the time I forced myself back to a dentist who knew what to look for, it had made the transformation Brian discussed above and was now a full-blown stage 2, SCC. I was lucky it wasn't in my lymph nodes yet.

DO NOT let this go like I did. Believe me...it is well worth the aggravation, annoyance, time, and money to deal with it now. It's nothing compared with what you will have to deal with if it turns into something worse!!

Your last post reminds me of myself. If I could only go back to that time in my life and make that appointment....how much I would have saved myself and my family..... Please call.

Jennifer "Had my head firmly buried in sand" Gilliard :-)


Jennifer
Stage II (T2N0M0) SCC diag 4/21/05; partial glossectomy & selective neck dissection (good margins and lymyph nodes negative), jaw split, 1/3 of tongue removed, free flap from left forearm - 5/23/05; 42 years old at diagnosis
#28008 03-23-2006 12:43 AM
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I have an appointment with another oral surgeon on 4/3. Hopefully this time we can get on with the second biopsy and figure this thing out. Everybody on this board has been so helpful and full of information for me. Thank you!

#28009 03-23-2006 03:27 PM
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You don't know how happy I am, and I'm sure everyone else is to hear you've made a new appointment. Denial is such a strange thing. It makes it so easy to put off what we know we need to do.

Hang in there Linda. I'm so glad your being proactive!

Jennifer


Jennifer
Stage II (T2N0M0) SCC diag 4/21/05; partial glossectomy & selective neck dissection (good margins and lymyph nodes negative), jaw split, 1/3 of tongue removed, free flap from left forearm - 5/23/05; 42 years old at diagnosis
#28010 03-24-2006 02:04 PM
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Linda,

Good for you! Let us know how everything turns out. We'll be thinking about ya'.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#28011 04-05-2006 02:27 AM
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Linda L Offline OP
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Hi,

I did go to the oral surgeon on Monday and he said I was fine and didn't need another biopsy. The sore place in my mouth has healed and he said that there's nothing to do a biopsy of. I'm going to accept what he says and get on with my life, unless of course my mouth gets sore again, then I'll have to get it checked out again.

Linda

#28012 04-05-2006 01:06 PM
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Hi Linda,

Great news. Congratulations.

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"
#28013 04-05-2006 11:47 PM
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Yay! That's great news Linda.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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