VLP mouth cancer

Hi Posi. I think Lyn Sophie66  can help here. She is in Australia but likely will pop on when time allows. 
Click/tap on her name in this post and it will take you to her bio. 

Hi Posi As Dani says Lynns  our expert on lichen planus sm sure she’ll pop on when time allows. 
Hazel x

Good evening Posi, sorry to be reading this post as it reminds me of when i had three major operations from 2008 to 2010 with radio and chemotherapy after the first operation. I'm afraid I do not know of alternatives but I know that procedures, treatments, and recovery have improved since my last encounter in 2010. I had all my lower teeth removed and a lot of reconstruction work especially of my lower jaw so my facial features did change quite a bit and am PEG ( feeding tube in my stomach) dependent on my food intake although I can drink thin liquids which is a bonus for me. I was told that having my last operation was my only hope as they were running out of options, but as I said things have moved on since my cancer and i have adapted to my new way of life on the whole I'm very happy and still lead a near normal life. I hope you do get offered another alternative rather than go through another operation. Wishing you all the best, take care. 

                                                                                           Chris x

Hi Posi

I am so sorry that you are having to go through this. Lichen Planus sucks and unfortunately there is no cure for it. I had it from my mid 40's and it used to make my mouth so sore that I had difficulty eating. Usually there is a very low chance of it becoming cancerous but unfortunately we are in those low stats. I had my first op in 2013 when I was 59 then 2 more in 2019 and 2022. You can read my bio to see how things progressed from there. Don't lose heart though as life can still go on quite happily once you have adjusted to the changes. My lower left jaw is the only place I have not had cancer so I still have teeth there. Those teeth have come in really handy as I have now had reconstruction surgery and have a denture that has really improved my eating. I do look a little different now as my lips do not close properly on one side but nothing that I can't live with. My surgeon says he can improve that with another op but I am a bit reluctant at the moment as I am over ops. I may have the surgery in the future.

Over time you do adjust to the changes in eating and it now normal for me. I have just had an upgraded diet since I have had the dentures and am now able to eat pasta, rice and eggs. Before I could only manage puree. I still go out for coffee with friends and family (although I don;t like the taste of coffee since radiotherapy and drink hot chocolate). I can also now eat something soft when I am out such as a piece of cheesecake. I have found ways and means to get around the eating issue and have had several lovely holidays staying in self catering accommodation. In fact Terry my husband and I are going for a 17 day trip to Tasmania in November.

I volunteer at the local library and love looking after my grandchildren and am celebrating my 70th. birthday this year with a big party.

Life goes on very happily for me in spite of all the ops. It took me a period of adjustment  and there were quite a few down times but thanks to my wonderful surgeon and the support of my family and this forum I worked through them. You know the thing, 'why me?', 'my life wasn't suppose to go like this' 'you don't understand what I am going through' etc. All valid thoughts that need to be worked through.

I don't want to waste my life after my surgeon has given me a third chance at life so I have grabbed it in both hands and don't want anything to hold me back. Who knows what will happen in the future, does anyone know. I might need another op on my last remaining jaw but I might not so I am not going to waste my time worrying about it.

This is not an easy time for you but you will come out the other side too. Have faith in your surgeon and take it a day at a time. Things do get better trust me.

Sending you hugs

Lyn

x

Lovely reply Lyn xx

Thanks Chris much appreciated. I think there is little chance of an alternative but I should be strong enough. Glad to hear things are improving for you and that you still enjoy life.

Hi Lyn. Thank you once again for  such a reassuring post. We want photos of your 70 th birthday party can’t wait to see the kaftan and cheesy pineapple sticks. 
hugs H xx

Hi Hazel

There will definitely be photos kaftan and all.  May not be the most beautiful as I have become rather toothy since my reconstruction surgery but I am practising my smile in the mirror to get the best results. Not sure I will be able to manage the cheesy pineapple sticks at this stage but who knows. I will definitely be able to manage the fondue and Black Forest birthday cake.

Hope all is going well with you.

Lyn

xx

Sophie66 said:

Not sure I will be able to manage the cheesy pineapple sticks at this stage but who knows. I will definitely be able to manage the fondue and Black Forest birthday cake.

I'm a couple of years in front of you. Those were staple dinner party foods.....how things change. Hope your nostalgia completely overwhelms you and you have a wonderful day

Hi Lyn Am sure you’ll have a wonderful day . We’re good just getting ready for the  next trip.Enjoy the build up as well to your party and the Black Forest birthday cake !

hugs Hazel x