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Liz1
@elizabethbryant

Posts: 111
Joined: Oct 04, 2016

Oral cancer and Severe oral dysplasia

Posted by @elizabethbryant, Jan 20, 2017

What is the treatment for severe dysplasia developed, after partial removal of tongue from cancer.

REPLY

@alpaca

Elizabeth, I have been thinking about this. I often refer to the Oral Cancer Foundation website where they have some information on this topic. They mention “chemoprevention” which seems to involve taking antioxidants. “If the size of the lesion, its location, or the medical status of the patient would make surgical removal difficult, use of antioxidant supplements should be considered as “chemoprevention” to try to prevent
progression to carcinoma. Beta-carotene and the retinoids are the most commonly used antioxidant supplements for chemoprevention of oral cancer. (25) However, although antioxidant supplements have shown promise, they have an uncertain success rate and no long-term results.” This was a page about dysplasia and leukoplakia. Has you doctor recommended this sort of treatment? Wishing you well.

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Patti, I checked with my neighbor this a.m., her condition is different.  There are so many kinds
of oral conditions.  I would still research the internet for this condition.
I will also.  If you have a moment and give me some medical terms of the condition.
Don’t worry that only makes it worse.  Sounds like you need to find the two lpiece kit that
has a tongue brush and scraper in it that cleans the tongue.
I wonder if this condition is coming from your stomach.  Now I a guessing without all the information.
Just a thought.   Elizabeth

@alpaca

Elizabeth, I have been thinking about this. I often refer to the Oral Cancer Foundation website where they have some information on this topic. They mention “chemoprevention” which seems to involve taking antioxidants. “If the size of the lesion, its location, or the medical status of the patient would make surgical removal difficult, use of antioxidant supplements should be considered as “chemoprevention” to try to prevent
progression to carcinoma. Beta-carotene and the retinoids are the most commonly used antioxidant supplements for chemoprevention of oral cancer. (25) However, although antioxidant supplements have shown promise, they have an uncertain success rate and no long-term results.” This was a page about dysplasia and leukoplakia. Has you doctor recommended this sort of treatment? Wishing you well.

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Hi Elizabeth Thanks for taking the time to email me back. My sister in law deals with oriental medicine and she said she thought it was the acid from my stomach. To this date no doctor has given me any medical term other than like I said family doctor said thrush but the medication did nothing then he recommended me to a ENT. He saw me twice gave me a thorough exam into my throat and mouth. He couldn’t come up with any thing but he did say if you want I can give you a referral to Mayo. Then to my dentist and he said get a tongue brush which I did but it doesn’t take care of my problem. So here I am worried sick that it is something serious and no one can tell me anything. Any help you can give me would be truly appreciated. I’m not real good on the computer so if you don’t mind researching it a little more maybe you can come up with something. Do you still have the condition or have you found something that will help or get rid of it.
God Bless you sweetheart for your help
Patti

@alpaca

Elizabeth, I have been thinking about this. I often refer to the Oral Cancer Foundation website where they have some information on this topic. They mention “chemoprevention” which seems to involve taking antioxidants. “If the size of the lesion, its location, or the medical status of the patient would make surgical removal difficult, use of antioxidant supplements should be considered as “chemoprevention” to try to prevent
progression to carcinoma. Beta-carotene and the retinoids are the most commonly used antioxidant supplements for chemoprevention of oral cancer. (25) However, although antioxidant supplements have shown promise, they have an uncertain success rate and no long-term results.” This was a page about dysplasia and leukoplakia. Has you doctor recommended this sort of treatment? Wishing you well.

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Mine started in my stomach with a burning at the top of my stomach. From stress. Then I had a puddling
of thick salvia that would accumulate at night and then this would start an irritation under my stomach
basically eating away the tissue. I believe your sister in law to be correct. Most things origin is the
stomach. This is the first doctor I saw and he said after much testing it wasn’t acid reflux and to
see another doctor. Could be an enzeme imbalance but that would be like finding a needle in
a hey stack. I will see a doctor outside of Baltimore MD that my John Hopkins surgeon recommended
he deals with oral mouth issues.
There is also a doctor at MCV in Richmond. He said it came from the immune system.
It seems stress goes to the gut and immune system and this is a result.
As for my case I know mine came from the gut and went up as the pain was in the top of the
gut first.
There are many types of oral mouth disorders and it sounds like you are having some type of
disorder with symptoms in a very early stage. It takes some time to develop into something
more serious. It took me 2 years to develop the tongue cancer stage 1 superficial.
Stop worrying it only makes it worse. Relax and calm down. If you do and take an anti anxiety
drug such as clozapam at night and it goes away (Stay away from dairy) Then you will
know you have diagnosed your problem. Watch your diet. Eat green food, make smoothies
with a smoothie machine from Wal Mart that is $15. Use organic foods, stay away from meats
and hard to digest foods like meat. Fish is easy to digest. Smoothie with apple, celery, kale,
heaping tablespoon of “Trivia” in all smoothies. New research reveals the anti acid are not the
problem, we don’t have enough acid. The pharmacy companies are making a killing off of us.
This doesn’t mean you should eat a lot of acid foods, because cancer can’t survive in an
potatoe with ” Earth Balance” soy free plant based butter (Wal Mart) Reduce the stress, which goes
straight to your stomach. I still have the lichen planus, the kind that is difficult to get rid of, someone
else has it and it went away. I understand it is Immune system related.
I will be back Friday. Stop worrying. Elizabeth

@alpaca

Elizabeth, I have been thinking about this. I often refer to the Oral Cancer Foundation website where they have some information on this topic. They mention “chemoprevention” which seems to involve taking antioxidants. “If the size of the lesion, its location, or the medical status of the patient would make surgical removal difficult, use of antioxidant supplements should be considered as “chemoprevention” to try to prevent
progression to carcinoma. Beta-carotene and the retinoids are the most commonly used antioxidant supplements for chemoprevention of oral cancer. (25) However, although antioxidant supplements have shown promise, they have an uncertain success rate and no long-term results.” This was a page about dysplasia and leukoplakia. Has you doctor recommended this sort of treatment? Wishing you well.

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Thank you so much for your email. I have so many encouraging words from different people and I forget (sorry) if I replied to yours.
My question….do you still have the same white tenticles on your tongue or did you find out what it was and got treat for it. If you got treated for it what was the procedure? I am still trying to deal with my tongue issue.
Your fed back would be welcome and again thank you so much for your input
Patti

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@alpaca

Elizabeth, I have been thinking about this. I often refer to the Oral Cancer Foundation website where they have some information on this topic. They mention “chemoprevention” which seems to involve taking antioxidants. “If the size of the lesion, its location, or the medical status of the patient would make surgical removal difficult, use of antioxidant supplements should be considered as “chemoprevention” to try to prevent
progression to carcinoma. Beta-carotene and the retinoids are the most commonly used antioxidant supplements for chemoprevention of oral cancer. (25) However, although antioxidant supplements have shown promise, they have an uncertain success rate and no long-term results.” This was a page about dysplasia and leukoplakia. Has you doctor recommended this sort of treatment? Wishing you well.

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It is really a coinsidence my therapist just gave me a perscription for that medication. After I have finished this to you I am going into town to pick it up.
I hope you are well and although its easy to say relax you know yourself its hard so may this medication will help. By the way I live in Florida and there is a Mayo Clinic in Jacksonville about an hour and a half from here. But my husband wants me to wait before making an appointment saying that stress and anxiety is my problem. So I will do like he wants me to do but after taking this medication and I still have this slimmy stuff on my tongue I will make an appointment at Mayo.
God Bless you Elizabeth and stay in contact. I want to help you like you have helped me.
Patti
—- Mayo Clinic Connect wrote:

@alpaca

Elizabeth, I have been thinking about this. I often refer to the Oral Cancer Foundation website where they have some information on this topic. They mention “chemoprevention” which seems to involve taking antioxidants. “If the size of the lesion, its location, or the medical status of the patient would make surgical removal difficult, use of antioxidant supplements should be considered as “chemoprevention” to try to prevent
progression to carcinoma. Beta-carotene and the retinoids are the most commonly used antioxidant supplements for chemoprevention of oral cancer. (25) However, although antioxidant supplements have shown promise, they have an uncertain success rate and no long-term results.” This was a page about dysplasia and leukoplakia. Has you doctor recommended this sort of treatment? Wishing you well.

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Hi Patti, I am thrilled that you are taking action to be an advocate in your health care. I am so proud
of you. One thing I forgot to mention is for you to stay away from sugar or anything that turns
to sugar except if it matabolizes slowly. Such as a sweet potato. Bread is a no no or sugar products
produce yeast. Pasta produces yeast. I have had this since 2013. I am going to see a doctor on
Friday to co ordinate my care. It is important to brush your tongue and use the plastic scraper this
keeps the mouth clean. I use Biotene toothpaste which helped with the irritation and the burning
I was experiencing. Please try to relax and the end of the day how much did what we worried about
matter. My husband’s personality was always so intense and mine also. We are not together
he fried his body out with his intensity. Relax and know that you are resolving your situation early
and you will be fine. Oh, also, you have to Relax when you take anxiety med at bedtime and let the colozapam sp_ take over…..relax take a warm bath……..relax…..God loves you, He always has and He always will……. ……………..Elizabeth

@alpaca

Elizabeth, I have been thinking about this. I often refer to the Oral Cancer Foundation website where they have some information on this topic. They mention “chemoprevention” which seems to involve taking antioxidants. “If the size of the lesion, its location, or the medical status of the patient would make surgical removal difficult, use of antioxidant supplements should be considered as “chemoprevention” to try to prevent
progression to carcinoma. Beta-carotene and the retinoids are the most commonly used antioxidant supplements for chemoprevention of oral cancer. (25) However, although antioxidant supplements have shown promise, they have an uncertain success rate and no long-term results.” This was a page about dysplasia and leukoplakia. Has you doctor recommended this sort of treatment? Wishing you well.

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@elizabethbryant Hi Liz: Please let us know how your doctor appointment goes on Friday. I’m hoping that you have a kind doctor who listens and is responsive to your needs. Teresa

@elizabethbryant

I live in VA. I am looking for a private practice doctor surgeon for oral tongue cancer and severe dysplasia.

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@hopeful33250 Hi Teresa, I am praying for a doctor that will get the other doctors
organized and doing their job, My family doctor told me to tell the other doctors, I am
not a number. Seems our country’s health system is an Industry. My surgeon had
to see 33 patients a day the nurse said because of Obama Care. I hope all that
changes and quickly. My case with many doctors involved, in all directions, was undiagnosed until it went into cancer from 2013 with very clear symptoms. Just
no one took even the time to check it out. The average person could google the
symptoms and diagnose. I looked to the doctors and they failed. The one
i see Friday is suppose to be very good, but I don’t know if she can whip the
others into shape……..Thanks for your kindness Teresa.

@alpaca

Elizabeth, I have been thinking about this. I often refer to the Oral Cancer Foundation website where they have some information on this topic. They mention “chemoprevention” which seems to involve taking antioxidants. “If the size of the lesion, its location, or the medical status of the patient would make surgical removal difficult, use of antioxidant supplements should be considered as “chemoprevention” to try to prevent
progression to carcinoma. Beta-carotene and the retinoids are the most commonly used antioxidant supplements for chemoprevention of oral cancer. (25) However, although antioxidant supplements have shown promise, they have an uncertain success rate and no long-term results.” This was a page about dysplasia and leukoplakia. Has you doctor recommended this sort of treatment? Wishing you well.

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What a sweet lady you are, But you know how hard relaxing is. I worry all the time about this situation but like I said my husband is my support he is so good to me.
Please make sure you let me know how you got on at the doctors. I am giving myself at my husbands request 2 more weeks before I make an appointment with Mayo and to be sure I will keep you posted.
God Bless
Patti
—- Mayo Clinic Connect wrote:

I know this conversation was started over a year ago, but was wondering about your outcome @elizabethbryant ? 3 years ago I was also diagnosed with severe dysplasia on the outer and lower-right side of my oral tongue. My first procedure was a partial glossectomy. May 1st of this year I was diagnosed with mild dysplasia and reactive leukoplakia, and underwent laser ablation to remove it all from the same area of the tongue as before. Just this morning, I had my 3 month post-surgery follow up and have developed additional mild dysplasia. I do not smoke or do drugs. I drink socially, about twice per month. I am a type 1 Diabetic. They can't tell me why it's happening yet. Doctor said we just gotta find the trigger and change it. Until then, I guess the plan is to keep removing pieces of my tongue. No action on the newest formation yet. I go back to check the progression in another 3 months. I sincerely hope you had a positive outcome from the treatment(s) you received.

Hi, good to hear from you. I was improving by my diet and stress reduction. When a family member became sick and I was thrust into the middle
as caregiver, within 2 weeks lichen planus spread to the left side of my mouth. Stress and lack of sleep….what you put in your mouth food,
is a huge part in keeping this under control. My ENT was pleased with my progress until I went back 4 weeks ago and the lichen planus had
spread……..very painful. More concern now that it has spread. ENT, Dr. UVA said medically there was no more she could do but cut. and
she didn't want to do that. There is a cream that is new and it compromises the "T" in the immune system to keep it from attacking this tissue
but the "T" cell also fights cancer. I have not used this yet. The ENT was very discouraging my last visit and I ask would she use this
cream in her mouth………no response. She is good and honest but UVA does not have a lot of cases of lichen planus and severe dysplasia.
Dr. ENT recommends homopathic or try new cream, which is new and not much data out yet. I see my doctor to be checked every 6 weeks
Someone on this site suggested "Tuff"s dental school in Boston, I believe. I hope she finds the cream her husband used that cleared it
up for both our sakes. I hope this info. helps

@daniellemajor

I know this conversation was started over a year ago, but was wondering about your outcome @elizabethbryant ? 3 years ago I was also diagnosed with severe dysplasia on the outer and lower-right side of my oral tongue. My first procedure was a partial glossectomy. May 1st of this year I was diagnosed with mild dysplasia and reactive leukoplakia, and underwent laser ablation to remove it all from the same area of the tongue as before. Just this morning, I had my 3 month post-surgery follow up and have developed additional mild dysplasia. I do not smoke or do drugs. I drink socially, about twice per month. I am a type 1 Diabetic. They can't tell me why it's happening yet. Doctor said we just gotta find the trigger and change it. Until then, I guess the plan is to keep removing pieces of my tongue. No action on the newest formation yet. I go back to check the progression in another 3 months. I sincerely hope you had a positive outcome from the treatment(s) you received.

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Hello @daniellemajor and @elizabethbryant – yes I have had this condition too, as well as oral cancer. Non-drinker, non-smoker. Sorry you have been losing parts of your tongue Danielle. It must be painful. Since what seems like forever I have not been able to eat hot and spicy foods. Very interesting to hear the link between stress and these "skin" conditions.

@daniellemajor

I know this conversation was started over a year ago, but was wondering about your outcome @elizabethbryant ? 3 years ago I was also diagnosed with severe dysplasia on the outer and lower-right side of my oral tongue. My first procedure was a partial glossectomy. May 1st of this year I was diagnosed with mild dysplasia and reactive leukoplakia, and underwent laser ablation to remove it all from the same area of the tongue as before. Just this morning, I had my 3 month post-surgery follow up and have developed additional mild dysplasia. I do not smoke or do drugs. I drink socially, about twice per month. I am a type 1 Diabetic. They can't tell me why it's happening yet. Doctor said we just gotta find the trigger and change it. Until then, I guess the plan is to keep removing pieces of my tongue. No action on the newest formation yet. I go back to check the progression in another 3 months. I sincerely hope you had a positive outcome from the treatment(s) you received.

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Surgery was not done on my tongue unless it showed severe dysplasia.. I changed from Dermatology to ENT doctor
I had a partial glossectomy of the tongue (awful) with skin graft. 2016 ……the recent event of family stress taking care
of a family member for 3 more weeks caused the lichen planus to spread to the left under side of my tongue.
I didn't realize I was living in so much peace and that this stress could cause this lichen planus spread so quickly.
The one thing that gives me peace is getting away from the stress/ My faith brings me peace at times and others praying
I see a difference……..Go to the quiet place……..I think about how Jesus went to "get away from the crowds" and
commune with the Father. I just telling you what works, cause the pain from the tongue surgeries make me horribly sick.
Enough my surgeon states we have to find another way rather than keep cutting on your tongue.
I am eating a lot of kale in a smoothie machine ($15) at Wal Mart Budwig Protocol. My ENT didn't want to create more scar
tissue. with surgery, so some natural means Homopathic. Please forgive if I have repeated myself, this is rough stuff and is stressful in itself. Remember NO SUGAR.
God does the healing, doctors do the surgery and what they know. Please give us wisdom.

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