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#191467 12-31-2015 12:48 PM
Joined: Dec 2015
Posts: 2
Peggyk Offline OP
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After a routine teeth cleaning, my new dentist recommended I get a biopsy on a odd white fuzz growing on my gums. My previous dentist accused me of being a smoker or drinker, I don't do neither one. Then he said it must be the Senidine tooth paste I used.

He retired, thank goodness!! and a young dentist took over. He took one look, saw that my hygienist had been recording its growth for almost two years, and ordered the biopsy. Two days later I had the biopsy, three days after that I was referred to UCSF, to see a head professor at the university. He took a look and sent me to a Onocologist that is part of the UCSF hospital. One week later I am seeing the Onocologist, his advice is to watch, wait and see. I go back in two months.

I trust my oncologist, but I am scared! After extensive research online for information,...I have come to the conclusion that waiting to see is accepting that I will get oral cancer, and there is a good chance that it will kill me.

I understand it's rare, but has anyone heard of a pre treatment?? There must be some way to stop it from developing into cancer. I do not want to loose my teeth and much of my gums and then to die from this disease.
Can you please help? Or do you know of anyone doing clinical trials on this disease? I have talked to the head nurse from the Head, Neck,and Throat" Department at The City of Hope, hoping they could help me find a clinical trial. But there non,.... So here I am, hoping for some kind of information that will lead me to a research lab, or someone doing any kind of drug development or trials for this disease. Thank you for reading, Peggy K

Last edited by ChristineB; 12-31-2015 02:11 PM. Reason: removed last name
Peggyk #191469 12-31-2015 02:21 PM
Joined: Jun 2007
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Welcome to OCF! Im hoping you will not need our services by having a noncancerous diagnosis. If you would need us, we are here to help.

Since you mentioned a watch and wait advice Im wondering what you have. Have you obtained the biopsy results yet or are you still waiting for them? If you have gotten them what is your exact diagnosis? Many pre-cancers like leukoplakia and dysplasia may or may not eventually turn into oral cancer. From what I understand the odds are very low of these problems ever becoming cancerous. Maybe the following info will help you learn about these conditions....


Leukoplakia and other premalignant lesions

More info


Here is a list of Clinical Trials. Clinical Trials

The links were found with a quick internet search. I hope they will be helpful to you.

Best wishes with everything!




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: Dec 2015
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Peggyk Offline OP
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Thank you ChristineB for your quick response. I had the biopsy on dec, 2, and the results stated it is a diagnosis of "Oral proliferative verrucous leukoplakia", From very thing I have read its aggressive and 74-100% of the time turns to cancer.
I am confused about many things, one being the diagnosis. I handed the pathogists paperwork to the doctors, it clearly stated the above diagnosis. But when I checked into the online "my online health site", it stated "leukoplakia". Is there a difference? Thank you, peggyk

Peggyk #191499 01-04-2016 09:35 AM
Joined: Jan 2013
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Hi Peggy,

I'm sure you are concerned, if not scared out of your wits. UCSF is one of the best facilities so you are in good care now. If you are confused ASK questions until you are satisfied.

My own experience is medical professionals take more interest when they know you have done some research and are more knowledgeable. I rarely felt they were annoyed with me pelting them with questions that demonstrated I had some idea of what I was asking.


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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