Posted By: Janet Schwarz Dealing with Facial Disfiguration--Help!! - 05-12-2008 08:17 PM
I was diagnosed with Adenoid Cystic Carcinoma in October 2007 and had radical facial surgery November 20, 2007. The head and neck surgeon thinks he got all the cancer, but it had spread to the nerves in my face which resulted in removal of the external and internal cheek. Reconstruction was done with two skin flaps taken from my right thigh (12 inch scar). After 30 grueling radiation treatments and 12 weeks of recovery, I'm still having a difficult time dealing with the facial disfiguration which I will have for life. I just started seeing a psychologist to help with this, but I feel like the best help is from someone who's already been through this. I would love to her from you if you'r out there!!
Posted By: Suess57 Re: Dealing with Facial Disfiguration--Help!! - 05-12-2008 10:56 PM
Hi Janet,

I don't know anything about dealing with disfiguration but I'm sure there will be someone on this board who can share their experiences with you. I just wanted to welcome you here and wish you the best as deal with this.
Posted By: Gabe Re: Dealing with Facial Disfiguration--Help!! - 05-15-2008 06:05 AM
Hi Janet,
I guess my facial disfiguration is not too bad. Long scar down the neck from the dissection, scar from tracheotomy and from where lip was split to crease in chin.
All done in Sept 2006 but scars will also be there for life. I think I have developed a scarf, choker type necklaces and polo neck fetish crazy
Hopefully others here can help.
Welcome
Gabriele
Posted By: helen.c Re: Dealing with Facial Disfiguration--Help!! - 05-15-2008 08:39 AM
Hi Janet
Firstly just remember that it is still early days and the livid redness from the scars will fade with time, it now nearly 4 years since my op and everything is now back to my normal skin tone. In the meantime keep your scars out of the sun (baby total sunblock is good) and twice a day keep the scars moisturised (please check with your doc what to use as you had radiation)
Wish I could speed up time for you.
Try to remember that it really does look worse to you than it appears to the rest of the world.
Sunshine.. love and hugs
Helen
Janet,
I have a scar through my lip, down my chin and under my neck and also from a trach. My chin stays swollen from lymph fluid and I keep massaging every day. If I do not, it gets bigger. I wear a turtleneck even in the summer. The worst part is that part of my jaw is missing so my chin juts in under my top lip and I cannot hide that. I still talk to people and work every day and go on like I can hide it, but when I look in the mirror, I want to cry.
I just remember my 2 sons and my loving husband and try to be brave with it for them. I also remember the days when I thought every day was my last, and how sick it felt in my stomach.
I try now to be happy that I am here, and I get excited over the little things.
I get to go to my son's graduation from Johnson & Wales this weekend and I am so excited. A road trip with my family and a very happy one at that.
I quess just a day at a time. I wish I had talked with someone, but I never did. You sound like you are taking control of it.
The advice that it will look better in time is good advise. My doctor says one day I will wear v-necks again. I don't believe it for a minute though, but I will wait and see.
Take good care of yourself and I hope you will find some good advice.
Debbie
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