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Joined: Mar 2019
Posts: 1
eee4 Offline OP
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Joined: Mar 2019
Posts: 1
This is my first post. I'm just going to be candid. I apologize in advance if this reads like a horror movie to some of you. I don't see how I can change this! I'm hoping for some answers or insight. This seems the group that can help me.

My 59 year old husband has dementia. Specifically, he has fronto-tempural dementia which affects his judgement, personality, logic, etc. He has / had an IQ of 155. But at this point, he can't convey information from a doctor. Needless to say, it's a horror.

He was dx with Lichen Planus in 2006. He had numerous lesions and he quit smoking at that time. FF to 2019, the lesions have been there all these years. November, 2018, his dentist saw a new (red) lesion. My husband hates doctors and again, often makes no sense. He told the doc he bit his cheek, which postponed a biopsy. I cannot interfere in this stuff (legally), plus my husband get (dangerously) angry if I pop up all over his medical care, which is something I have to do because of the dementia,

Dentist referred him to an oral surgeon who did a biopsy. Biopsy came back..

Impression: Erythroleukoplakia Left Cheek

Dx Lesion, left buccal mucosa: Moderate to focally severe epithelial dysplasia, hyperparakeratosis and chronic mucositis.

The doctor said (according to my impaired husband) that what he has was treatable but not curable. He said if it turned to cancer, it would be UNtreatable and incurable. The reason being, the lesions are all over his mouth. More than can be cut out.

He was treated with an oral steroid rinse. He went back to the oral surgeon to see if it did any good. ::no real answer:: And that was it.... that's all I know,

I do know two retired oncology nurses, 80 years experience, combined. They both told me, independently, that my husband has cancer... or will inevitably. I had searched around and pretty much figured this out.

Thing is, and I am sorry for anyone who reads this and is hurt by it; if there might be a chance to save him. he's not willing to make any lifestyle changes. He is going to continue to drink, chew nicotine gum, use nicotine lozenges and VAPE - this is all due his dementia.

It's been a couple weeks and my husband is convinced he has the same thing he has in 2006 and need only get it checked in another ten years. We have a hard copy of the pathology report but he just reads it and proclaims this to be the case.

As it is, he is happy so long as no one tells he has dementia or cancer. There is a huge blessing in this in that he is suffering no anxiety and feeling no pain at this time. For the record, he would never agree to have his head radiated or anything... plus it makes no sense to go through cancer treatment so you can die a horrible death from dementia.

So here is my question:

From what you read is there any real chance that my husband continue to live with these lesions for ten years? Or do you agree with the nurses, based on what you know about oral cancer?

Thanks. And again, I apologize for the tone of this. I've been dealing with the dementia for four years and I'm a bit strung out.

Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Welcome to OCF! Im very sorry to read the situation you and your husband are going thru! You definitely have your hands full and need to tiptoe around your husbands other medical conditions which is NOT easy!!! We will do our best to help you.

Our site is made up of oral cancer (OC) patients/survivors and caregivers. We do NOT have medical degrees, years of medical schooling, patient clinical experience, the patients full medical history (not that it would help us), or the patient there to ask questions, etc. But, what we have many doctors and nurses do not. We have gained the knowledge by going thru biopsies, diagnosis, medical procedures, surgeries, recoveries etc which helps us to understand on a level most medical pro's can not. Most of our members can tell you a million things about OC but they may not fully understand biopsy reports or other ailments that are not cancer. We do have quite a few members who have had dysplasia or leukoplakia, most have not had it turn cancerous but some have.

As far as asking retired nurses, Im sure they're trying to be helpful but they probably wouldnt be the best resource. Im surprised they are telling you your husband has or will have cancer when the biopsy proved he does NOT! Unless the nurses have specifically worked with OC patients, they probably wouldnt have all the knowledge to be able to make a proper diagnosis with the limited second hand info. Also being retired from their profession they probably wouldnt be keeping up to date on the most recent medical discoveries especially when talking about things that arent very common. Leukoplakia and dysplasia lesions usually do come back after they're been removed. The majority of people who have this do NOT have it turn into cancer. But of course every patient is different so it could happen (hopefully not!). Im sorry but I cant remember the percentage of patients who have had their leukoplakia and/or dysplasia change and become cancerous but I do know its VERY low.... maybe only 10-20%. Of course every patient is different and what works on one may not work for someone else. Trying to compare patients is like comparing apples to oranges. There are far too many variables to consider which makes it impossible to form an opinion based on other patients. Sometimes dysplasia and leukoplakia are called "pre-cancer" which isnt completely accurate considering most people who have it do NOT end up having cancer. Over the years, we have had quite a few people come to our site asking for help with dysplasia or leukoplakia. Unfortunately most of our members have no experience in this and are not able to help as its not OC which is what OCF deals with.

On our main OCF website, theres a section that will help you to learn more about non0-cancerous mouth issues. I hope your husbands condition does NOT ever change into being cancerous. Your husband may want to go for a second (or third or fourth) opinion about what he has going on. Since he doesnt have a cancer diagnosis the usual treatment facilities (comprehensive cancer centers --- CCC's) may not be available to him. An oral surgeon or ENT who specializes in treating patients with leukoplakia and/or dysplasia and OC may be your best bet. You would definitely need him to get examined by someone who has years of experience in this sort of thing. Best wishes with everything!!!

Main OCF site, Pre-malignant conditions

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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