Posted By: oceanangel it is not cancer! - 07-14-2005 02:52 AM
Well I saw the surgeon today and the good news is that the white patches were that lichen condition. There is not so good, but compared to the possibility that it could have been cancer anything looks good at the moment. He said that it is not curable and comes and goes over a life-time, but the symptoms can be treated with pain relief type medication. He said it is an auto-immune system disorder and I already have a cluster of auto-immune disorder related conditions so that was no surprise. I had assumed that the pain in my mouth that I experience periodically was from outbreaks of ulcers but apparently it is the lichen thing. That was what prompted me to seek attention in the first place, it got infected. So, thank you so much for your support and concern. Everyone helped me so much through a really stressful time. I have so much admiration for not only the courage and determination that everyone here has shown through their posts, but also the ability to still have time to show compassion and concern for people like me who are only at the stage of worrying that they might have this disease. May God bless you all and keep you safe. I will drop in from time to time to check out how people are going as I have grown to really care about you folk. Meanwhile back to my life, I can get on with my studies to re-train through uni as a social worker. I hope that one day I can give back to the world the help that people like yourselves have given to me. thank you so much cool
Posted By: Marica Re: it is not cancer! - 07-14-2005 04:47 PM
Congratulations , wonderful news and you`re welcome!
Marica
Posted By: aussieh Re: it is not cancer! - 07-14-2005 05:54 PM
Wonderful news for you. Hope you will keep up with the board, Oceanangel. It is good to see other aussies here to help raise the awareness of the disease down under. Love and light from Helen
Posted By: Daniel Bogan Re: it is not cancer! - 07-14-2005 09:14 PM
So happy to hear your news. Nice to know that cancer doesn't win the battle everytime. Enjoy your new life and visit us often.

Danny Boy
Posted By: ssax Re: it is not cancer! - 07-15-2005 12:27 AM
Congratulations on your non-cancerous diagnosis. I, too, had lichen planus. In a small percentage of cases (3-5% depending on which study you read), the lichen planus' lesions can turn malignant. This is what happened to me. I had three non-cancerous biopsies before one of my lesions developed into SCC.

It is extremely important that you closely monitor these lesions. I started seeing an oral pathologist once a year to check on mine. In retrospect, I should have done it every three months. Also, see if you can find a dentist, periodontist or oral pathologist who has experience with lichen planus. There are a variety of treatments, none of which eliminate the lichen planus patches of discoloration but which can alleviate the discomfort associated with them. These include steroidal creams, rinse and ointments. Also, lichen planus patients are usually more succeptible to fungal infections so it is good to have some anti-fungal lozenges (or trouches as they're sometimes called) to jump on any indication of a fungus infection.

I was fortunate to find an oral pathologist in New York City who has treated over 1000 people with my condition. It's worth the 5 hour drive to see him. Following my radiation, I still check in with him every 3 months to check for any cancerous or pre-cancerous patches. His examination is different from my ENT doc in that he checks the tissues of the oral cavity more carefully but doesn't seem as familiar with some of the manual examination techniques that the ENT uses to check the lymph nodes and muscles in the head neck area.

Again, it's great news that you don't have cancer and it is an opportunity to closely watch your lichen planus to jump on any potential lesions or patches before they develop further. Best, Sheldon
Posted By: oceanangel Re: it is not cancer! - 07-15-2005 01:00 AM
Thank you Sheldon, I had a look on the net and researched this lichen planus thing and it is still quite nasty isn't it? and the doctors really don't seem to know much about it. I will take your advice about having it checked for malignancy. I don't know where I will start to find a medical person who knows about it, as I live in Australia, but I will persist, as it is too important to ignore. After researching this myself I I have concluded that I have had in it in the water works recently too. The urologist tested me for every disease under the sun and finally did a cystoscopy and found that the water works were almost totally blocked. I had been experiencing horrific pain when passing water and passing water was becoming increasingly difficult. Apparently the lesions form in the water works and heal and scar and eventually the scarring blocks the pipes so to speak. Obviously the urologist wasn't looking inside my mouth for him to see the lichen planus there. I don't have faith that he would even have made the connection if he had known about it to be honest. It is so important that we have comprehensive health care isn't it? Where a practitioner examines the entire person, and not just the bit that they have specialised in. thank you again and I will start searching for an oral pathologist in my area.
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