Daniel - Age 39. My cancer story begins Fall of 2023, when I noticed a small bump, similar to a skin tag, on the roof of my mouth. I ignored it for as long as I could, but as a goal to start taking care of myself, started going back ot the dentist in June of 2024. The dentist felt it was a benign issue, and was probably just a deposit of some sort on the roof of my mouth, but due to the firmness, wanted to get a biopsy sent off. In July of 2024, I had a small section biopsied, and the call came August 7th of 2024 - You have cancer.

At first I was in disbelief because I'm adamantly against smoking, and unsure of what I did wrong to cause this. However, there was no time to waste, and began seeing an oral surgeon about surgically removing it. Very poor experience with the surgeon as they offered very little information as to what was going on and what the outlook would be. Through a CT scan, it was determined that the tumor was around 1cm x 1cm x 0.5cm and had started to misshape the hard palate. A surgery plan was put together and I began also seeing a prosthedontist for the hole in the roof of my mouth that was expected. BTW - They do not accept any insurance, so I was also given the sticker shock of $4k for the first mouthpiece (referred to as an obturator), $6k for the second one post surgery and recovery, and $9k for the final obturator.

Fast forward to September 30th, I had surgery to remove the tumor and part of my hard palate, and also have it sent off for labs to ensure the margins were clear. The absolutele worst experience from this was the surgical packing that had to be in place, between the obturator that was installed during surgery, and the open wound. The smell, the drainage... nausea inducing nightmare. Of course it was in my sinus cavity too, so I could smell and taste the fluid and was looking forward to the post-surgical removal of the packing. In one week, I managed to lose 35lbs, and continued to lose weight until my mouth was healed enough to start eating more solid food without the pressure of the obturator hurting my wound.

The dissected tissue was analyzed during surgery and found to be in clear margins on the bone and the soft tissue, however the dissected tissue was sent off for confirmation, where it bounced between 3 different labs, and finally landed at University of Michigan. The results were postive for margins on the bone, however they did find perineural invasion, indicating that RT was now back on the treatment plan, since I was advised that there was an 80% chances of recurrance within 8 years without RT.

Fast-forward to now - Tomorrow I have my first appointment for CT and masking for RT to begin. It's expected to begin within 2-3 weeks while they make the immobilization mask. And today, for the first time in over 10 years, I had to trim a beard of 12 inches, down to 0.25in for the masking, and feeling lost in my own body. I feel like a stranger to myself, and just want to pull through for my wife and kids.

Daniel,

Welcome to the OCF forum. I am so sorry for all you are going through. My oral cancer was on my tongue and in one lymph node. I went through surgery and RT in 2020 when I was 52. Your procedures are quite different but I can relate to losing lots of weight, the confusion of how did this happen (not a smoker or much of a drinker), etc. They removed half my tongue and I had a feeding tube through my nose for weeks. I had to learn how to drink, eat, and speak all over.

Upshot, I totally agree with your motivation. I kept a pic of my wife and kids with me at all times in the hospital. My surgery was right after they shut down California for Covid so I was in the hospital without loved ones the entire time. In those darker moments, I would pull on them and God. We got through it. It took many months for me to find my new normal but slowly all things got better. My recovery from surgery improved by the day but from RT I had to be much more patient. Some flavors took years to fully come back and some spicy stuff I still can not eat. I can still recall the first time I spoke to a stranger, ate food in public, etc.

Today, I am stronger for it. I am more present with loved ones, more patient in life, and my relationship with God is deeper. Please keep us up to date as you go through your CT and RT. Your story will certainly help others plus I found journaling to be helpful for me in general.

Stay safe and keep the faith,
Nels