Hi,

I am a 50 yr old female, never smoked and don’t drink too often (maybe twice a month).  I had a sore on the side of my tongue for over a year (about 16 months) and I thought it had to do with lichen planus.  Finally had biopsy and it was squamous cell carcinoma.  This was diagnosed Dec. 19th 2018, had MRI Dec. 27th and saw oncologist Jan. 4th 2019.  He operated Jan. 14th 2019 and did a left partial glossectomy (about 1 cm deep and all around the sore which was about 0.5 inch x 0.75 inch). It does not appear that it spread so no chemo or radiation.  

The oncologist said that after 5 years he usually stops following patients but because of the oral lichen planus, he’ll keep following me.  That scares me a little bit because that means there’s a good chance it could come back!?  I hope not!

If anyone else has had cancer because of lichen planus, I’d really like to hear from you.

Liette

Original Post

Hi. We are in the same position.  I had the same surgery and treatment over. A test ago and also have LP.  

Many people have LP and like you we all worry.   I’m not a surgeon or oncologist but I just make side I have good oral health and also try to keep my anxiety to the lowest.  I avoid stressful situatikna because as I understand it LP is related to a breakdown of the Amune system.  Which I attribute to some of my problem   

I also had some tongue trauma in the months leading up to the diagnosis, I believe that was contributory   

There is a FB page too called tongue cancer survival.  There was a lengthy post about LP on there  

finally, you and I have been fortunate   Live life to the full now   It holds no promises.  Enjoy it and get back what you give out   

Much Love.  Take care  

 

 

Liette posted:

Hi,

I am a 50 yr old female, never smoked and don’t drink too often (maybe twice a month).  I had a sore on the side of my tongue for over a year (about 16 months) and I thought it had to do with lichen planus.  Finally had biopsy and it was squamous cell carcinoma.  This was diagnosed Dec. 19th 2018, had MRI Dec. 27th and saw oncologist Jan. 4th 2019.  He operated Jan. 14th 2019 and did a left partial glossectomy (about 1 cm deep and all around the sore which was about 0.5 inch x 0.75 inch). It does not appear that it spread so no chemo or radiation.  

The oncologist said that after 5 years he usually stops following patients but because of the oral lichen planus, he’ll keep following me.  That scares me a little bit because that means there’s a good chance it could come back!?  I hope not!

If anyone else has had cancer because of lichen planus, I’d really like to hear from you.

Liette

Hello Liette

My dentist diagnosed Lichen Planus Approximately 25 years ago and I really had no problems associated with this apart from occasional soreness if I ate spicy foods.

In 2010 my dentist spotted an unusual lesion in my left cheek and I was referred to hospital where Squamous Cell Carcinoma was diagnosed.

I have not smoked for over 30 years and do not drink other than on social occasions.

The cancer had spread into my lymph nodes but the surgery and adjuvant radiotherapy worked well and I was clear for the next 8 years - leading a full and normal life apart from a slightly reduced mouth opening caused by Trismus.

In April 2018 on a random visit to a hygienist further problems were identified and a second squamous cell carcinoma was diagnosed. My consultant is of the option that the reocurrence is associated with Lichen Planus.

I have had further radical surgery including fibula free flap for my upper jaw but am now recovering.

Liette posted:

Hi,

I am a 50 yr old female, never smoked and don’t drink too often (maybe twice a month).  I had a sore on the side of my tongue for over a year (about 16 months) and I thought it had to do with lichen planus.  Finally had biopsy and it was squamous cell carcinoma.  This was diagnosed Dec. 19th 2018, had MRI Dec. 27th and saw oncologist Jan. 4th 2019.  He operated Jan. 14th 2019 and did a left partial glossectomy (about 1 cm deep and all around the sore which was about 0.5 inch x 0.75 inch). It does not appear that it spread so no chemo or radiation.  

The oncologist said that after 5 years he usually stops following patients but because of the oral lichen planus, he’ll keep following me.  That scares me a little bit because that means there’s a good chance it could come back!?  I hope not!

If anyone else has had cancer because of lichen planus, I’d really like to hear from you.

Liette

 

 Hi there I have got linchen planus and also was diagnosed with tongue cancer three years ago. I had a left partial glossectomy to which I found was horrendous. I have just had another biopsy done on a white patch on my gum and unfortunately it has come back as high-grade dysplasia so I have got to go into hospital and have that all removed. I’m absolutely gutted as I thought that would be the end of it but obviously not. 

Hope to hear back from you soon

Hi Nicky,

So sorry to hear about this.  I had to google high grade dysplasia.  It’s precancerous so does that mean they have to remove more tissue like when they do the glossectomy?  Do you know?  What part of the world are you from?  I’m in Ontario Canada.

When they did your glossectomy, how much of your tongue was removed?  For me, after the surgery, it felt like they took one third of my tongue but now that it’s almost all healed, it looks like just a little bit of it like one tenth was taken. They got 6mm clearance and the cancer was 1mm deep.  After the surgery, I had a granuloma that grew out of my tongue, they removed it May 8th and it was even removed and gone deeper into the tongue but another little one grew out again.  The dr said I must be prone to granulomas!  He burned the last little bit June 4th and it’s healed now but the side of my tongue still tingles like the feeling is coming back.  Did you get the feeling back on the side of your tongue?

Well hope to hear back from you.  I have to head to work.  Did you know that there’s a Facebook group called Survivors of tongue cancer?  People are great there. Ok, gotta go.

Liette

Hi liette,  yes it is pre cancerous and I have got to go in and have it removed 🙄 my tongue healed quite well although it is still numb down that side it seems to have grown back a little.  I have had biopsy’s etc for the past 18 years!!!!! Just seems never ending. My lichen Planus gets worse if I am stressed 😥, how does yours affect you. My tongue always feels dry and like a l of rubber 😥 I have been told to cut down drinking larger etc so trying to find a low alcohol drink 🥤 I am also going to try CBD oil to see if that works. Do you know of anyone of heard of anyone that has tried this, I have joined the Facebook page so thank you for that, 

talk soon Nicky 

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Hi,

Yes, stress is definitely a big thing!  I used to teach and did that only 8 years and had my 2 girls during those years.  I thought I had a pms problem and now I know it was just the stress.  I was lucky and was able to find a job in schools as a library technician so the teachers have to come with the kids.  Of course the salary is much less but a lot less stress as well.  I’ve been doing this for about 19 years now.  

As for dry mouth, it was really bad before the surgery but coffee probably didn’t help although now I’m drinking some everyday.  So since the surgery, my mouth has been moist enough.  Once school’s out, I’ll probably try to cut back the coffee! Herbal teas seem to make my tongue tingle a lot! (That’s on the surface, not where the surgery was!) Weird! You would think herbals would be better!  As for drinking, I don’t drink alcohol much and when I do, I like margaritas.  Wine is painful but I don’t really care for it anyway!  I have to eat dairy-free and gluten-free so beer is pretty much out.  During the school year, I’d say I only average a margarita or 2 per month.  In the summer months, a little more but now I may hold back since alcohol isn’t good!

I’d like to try eating plant based to see if my digestion would improve (I probably have IBS) and then maybe my immune system wouldn’t freak out and therefore maybe the lichen planus would get better but... I like meat!  I would be nice if our meals could be healthy and prepared for us! LOL

By the way, the picture of your tongue looks like mine after a few days after the surgery.  Good luck and I hope what you have comes out and doesn’t develop into SCC!

Liette

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