Hello,

I am a 4 time oral cancer survivor not related to HPV. First occurrence was in Aug. of 2014 in my left palate. Surgery followed by 30 radiation treatments. I lost 60 lbs. and most of my saliva.That in itself was a challenge. The next was June of 2017. It was now in my left cheek-again more surgery and a graft taken from my right thigh into my cheek. The next was Sept. of 2018. Again in my cheek and gum area-more surgery. Dec 2018-biopsy on lesions on my gum and palate showed severe dysplasia. This time my doctor referred me to a head and neck specialist who could resect and reconstruct the left side of my mouth. I had that done 3/4/19 and had a terrible experience. I also had all my nodes on the left side of my neck removed. Here I am almost 2 months out from the last surgery and am pretty depressed. Due to limited saliva, my teeth began to rot about 2 years ago despite exceptional oral hygiene. So, I had all my teeth removed-it was such a loss.The way I healed from my last surgery required me to have part of my top denture cut as scar tissue formed from my gum to top inside lip. The surgery let me with a droop on the left side of my lips and total numbness in the left side of my lips that extends to my chest. The scar from the neck dissection is tight and burns. I feel a little disfigured and like a stroke patient. I was told by doctors and social worker that I have to get used to my new normal-really?? I guess i am mostly angry-and sick of the whole thing. wendy

Welcome to OCF, Wendy! Im soooo very sorry to read about what you have been thru! Oral cancer (OC) can be a debilitating, disfiguring beast!!! Ive gone thru it 3 times in 3 years . I completely understand the shock it can be when everything appears to be ok but you are actually dealing with a recurrence, another one!

Many oral cancer (OC) patients/survivors get depressed, caregivers too. Its too much for some to process all at once. Theres nothing to be ashamed of by missing your former life. Its not easy to pick up the pieces and move on after everything you have been thru. The way the world is overly fixated on looks sure doesnt help either if you have any prominent scars or visible signs of your illness. Those changes arent so easy to get used to. Even worse is when people openly stare at you in public which can make someone feel pretty bad too. Im not sure if you have considered talking to your doctors, your ENT, or a plastic surgeon to see if anything can be done to change the drooping part of your face. Just be very selective with who you go to.... they MUST be very well acquainted with OC patients/survivors and the effects of radiation on proposed surgery sites.

You definitely have come to the right place by joining our group!!! Ive had life changing surgeries, then complications that left me disfigured. I didnt recognize myself in the mirror the first time I looked. I was told by my doc and plastic surgeons, I needed to wait until I was at least 1 year post my major surgery to have any reconstructive surgeries done. I waited 14 months then went back asking for changes. After twice submitting the surgery to my insurance company and getting denials, both my ENT and plastic surgeon wrote letters to my insurance company insisting the requested procedures were the result of cancer and were medically necessary and they need to be covered. The reconstruction surgery was not nearly as bad as other surgeries I had been thru. The surgery was a definite improvement but I still was disfigured, just not as bad as before. I had been a pretty lady when the whole cancer problem began and after my 3rd round of OC, I was a very different person not just physically but mentally as well. Its a very hard pill to swallow when your look different in a society thats all about appearances. Im no expert but somehow I came to terms with my fate during my 2 month hospitalization for having the mandibulectomy (jaw removal surgery) and complications causing my disfigurement. Every day I told myself (in my mind) ... everyones looks change, they fade as people age which every person eventually does, even the prettiest young lady will eventually look not so nice when she gets old. The most important thing I focused on is telling myself is no matter what happens, Im still the same person, its just now hidden on the inside and nobody can take that away from me, Im still me. When I went out and people stared at me, I would hold my head high, ignoring the stares and silently tell myself over and over... Im still me, thats part wont change and everyone eventually looks different than how they did in their younger days. If I can mentally handle the disfigurement, I am certain you can overcome it as well.

OCF's message board is like a gigantic long distance family where we all understand and support each other thru good times or bad. No matter how dark your day may seem, theres always someone here who will understand where you're coming from. Hang in there, Wendy!!! Time really does heal all wounds or at least make them more manageable.

(((HUGS)))

I'm so sorry your having to go through all this. It is soooo hard to live with the new normal. It really does take a while to allow ourselves to mourn for the us that we used to be, the lives we used to have and to accept our new normal, including appearance. I can understand that your still sad about lowing your teeth. I am six months post op, 3 months post rads and am trying to do everything I can to not lose my teeth but my consult with my dentist really hit home that the lack of saliva is already taking a toll.

Was your neck dissection done with your last surgery or prior? I felt so unhappy about my neck from the lymphedema and the scar and the main thing that has been helping is physical therapy. I go twice a week and they massage and work the scar and all the tissue to get the lymph fluid to drain away and my scar to be less puffed up. I also wear rock tape or clear scar sheets. You wouldn't think some sticky material would make the whole area feel better but IT DOES. I was so not a believer until I tried them both. The sticky material allows the skin to pull away from the other tissue to create a channel which allows for improved blood flow and lymphatic drainage. It might be worth a shot since you mentioned you have pain. Obviously, check with your doctor first, I'm just throwing ideas out.