My name is Bob M - 59 years old - live in California and had a partial glossectomy last September. What started as a lichen planus lesion on my tongue progressed over a period of 10 years into a squamous cell carcinoma. I had a portion of my tonuge removed - no graft. Fortunately it did not reach my lymph nodes (had my neck opened as part of surgery) and the prognosis is good but I still have plaque on my tongue and realize I'm at risk.

I'm interested in learning as much as possible about my own condition, the experience of others and in contributing whatever I can to help others.

Hi Bob, I had SCC in my sinus in '97, It didn't affect my tongue which I'm thankfull for. There are people on here who will relate to tongue problems who will be able to help you out. All the best, Hagg.

Hi there - my mum had SCC of the tongue and has travelled a very long and bumpy road. If I can be of any help, please ask away.

Hi WestCoast777,
As a fellow lichen planus sufferer I'm interested in your history and your progress. (I read your post on the topic about unknown mouth ulcers). I developed the SCC after 3 years LP and was really only diagnosed owing to my own vigilance. It was easy for everyone to say, "It's only lichen planus, no cause for concern..." - even though it hurt like hell. Since my op 4 years ago - partial glossectomy with small flap, partial neck dissection - I have been progressing well, with no LP on the tongue, but some on the insides of the cheeks. Like you, I never smoked, and drank wine occasionally. No-one can tell me why I developed LP - the explanations vary between an auto-immune disease and a stress related trigger, but I have never found anything really conclusive on the net, or how you can treat it. Of course I always throw a fit whenever there's an unknown lesion in my mouth - I would say the anxiety increases rather than decreases with the passage of time. I have been wondering how many people developed their SCC from LP - apart from you and KMD and one other lady about a year ago, I never found anyone on this forum. I think the only thing is to be vigilant - once you've made acquaintance with the big C, you can never relax, but I know I'm a lot better off than most people on the forum - I admire them all greatly in coming to terms with this terrible disease. I feel a little outside the range of the forum, as I have lived in Germany for nearly 40 years, and had all my trestment here, but I grew up in Manchester, England.
Best wishes to you all
Patricia

Useful websites:

• Oral lichen planus (Mayo Clinic)
• Oral Lichen Planus (e-medicine/WebMD)
• International Oral Lichen Planus Support Group

Dear Dr. Joshi,
Many thanks for the links. I had already visited two of them. There is not a lot of information on this disease in the German-speaking world, as is also true of cancers of the head and neck. I get my main information from English sources. There is a German forum for these types of cancer, but it is not so well organised and there is no medical supervision. I would like to thank everybody on this forum for their unstinting advice and emotional generosity. I haven't really had the courage until now to introduce myself properly, because I felt that my problems were marginal compared to what most of the members have had to go through.
Wishing you all well,
Patricia

Bob - I'm a tongue cancer with two surgeries two years apart and a third one "pending" and this one is to include a flap (rats), though it's clear people on this site have had them and managing well....I'm just not through the mental part yet of accepting that....

My surgeons and Moffitt cancer say the SCC frquently reoccurs and there is a need to be vigilant as you've mentioned already. As long as it remains "oral tongue" surgeries will be the first option... if it goes from there the chemo options are offered up (so my story goes).

I offer 1-800-ACS-2345 as a good reference that provides a free service from the American Caner Society and a real voice that can refer you to resources in your state. There are a number of support items within ACS.

I'm finding just today that this site may be one of the more viable sites with it's first hand experiences to offer up.... but every one's story is unique....

best wishes on your continued research on the LP issue.

bob (Pembo in Fla)

I spent a whole day learning about oral lichun planus and find some strange differences based upon what region it occurs in. In india for example I have seen many people with the disorder in their fingernails, which is supposed to be rare. My father in law first had LP in his skin in 2002 and was unaware of having any oral LP, until after a painful ulcer started bothering him this year. According to everything I have read, SCC is common enough in people with oral LP that it must be monitored closely and you shoul be seen by a dermatologists at least ever 6 months. Papa now has stage 1 SCC of the oral tongue and I am quite new to this site. In fact I'll be flying to india in two days to help him, but please email me at natasha_sup@yahoo.com . I'd be interested in starting OLP/SCC support group. I'd be happy to share with you what I have compiled, but sadly the data is a little bit conflicting in some places depending on where you go, so we need more research or clarification.