hello everyone, this is my first post and i have no idea what to expect.
i am a 17 year old girl, i just graduated high school. on july 6th i was diagnosed with a facial tumor, i need a biopsy to confirm it but my doctors are heavily considering it to be an ameloblastoma, a benign and aggressive tumor. i went from thinking i had an infected parotid gland to googling and preparing for the "jaw in a day" surgery.
i am terrified. i have a terrible mental state as it is and im just in severe shock. not sleeping, hardly eating, constant panic attacks (which i haven't had in years). i can only sleep in 2-3 hour increments due to excruciating nightmares. i have a consultation with an amazing surgeon, one of the pioneers of the surgery i need on the 13th to schedule a biopsy. i am just scared it'll come up malignant, and im worried i jinxed it by joining an oral cancer forum despite not having a solid diagnosis, but i need people to talk to who will understand. my friends and family are terrified. looking in the mirror or doing my makeup hurts. just knowing i have a tumor makes me want to crawl out of my own skin.
the hardest part is the wait. the whole situation is just traumatic. google is obviously no help, and there's no good information on ameloblastomas that is comforting as they are extremely rare. i just need some reassurance or maybe advice from someone who has been through the same thing. the future is so uncertain regarding college now, i had dreams to be a dentist. how ironic. im getting way too ahead of myself, im just so young and scared. any advice is great.

ACJ - I'm sorry to hear of your trouble. My road has been six years of oral cancer, not ameloblastoma, but here are a couple of thoughts.

First, know that it's normal to be scared when faced with potentially life-changing news like this. Second, it is also normal to presume the worst, and you will find lots of worst-case scenarios on-line. It sounds like you've already found that out but I would suggest you not dwell on those things (and you didn't jinx yourself by posting here!). Anxiety is not your friend right now and might make things worse. Take walks, do the things you love doing that take your mind off of this. Third, you need a support group. People you trust that you can be honest with and who will be honest with you. That could be parents, older adults or anyone what has been through something similar. Your support group might include a faith community. I have found my religious faith to be a vital part of coping and recovery. Fourth, find medical people you're comfortable with who are knowledgeable about this condition.

Good luck - keep posting and update your status when you know more.

Steve

Dear ACJ,

Wow, I am so sorry to hear of your situation. I echo Steve's advice and have been through the fear of a sudden stage 4 cancer diagnosis, major surgery, and radiation. Some things that helped me cope - exercise (esp outside in nature), reading, faith time, daily time with loved ones, writing (Journal), proper eating...I made up daily goals for each category and scored myself. A high score and i would treat myself (ice cream or a cookie or ?)

In the thick of it all, I had up and down days especially right after surgery. Sometimes it was hard to find hope. But, I can tell you, it came, sometimes through prayer, sometimes thru a text, sometimes thru a Nurse, sometimes thru a stranger sitting next to me. I look back on all that now as a gift. I found a deeper faith than i ever thought possible. And, although I still live with the uncertainty of cancer coming back for the rest of my life, I have more peace and joy and see the world in a different light now.

Hang in there. Look for joy and peace every day, even if it is a tiny thing, like the smile or hug from a loved one. Keep us up to date.

Stay safe and keep the faith,
Nels

hi nels, we were able to push through and get that july 26th date. 10 more days! my surgeon also reserved a time for me to get the tumor removed exactly two weeks after the biopsy, so on my 18th birthday i will be recovering in the hospital! we don't know what the surgery entails yet as we still need the pathology but i'm just happy that this is coming to a close and i can finally start recovering. will keep you updated!

Dear ACJ

Glad all is moving forward quickly. When I finally got my surgery date phone call, I can still remember how good that felt to know we would soon take action. I hung up the phone and started thumping my chest, jumping around our living room, and yelling "F%$! Yay! We got it - April 1! Cut this S*&t out of me! LETSSSS GOOOOOO! April 1 Yay!!!" over and over for about 2-3 minutes. It felt so good to have a solid path and trust in my care providers. My wife and I shared giant hugs and tears. An outsider might have thought I had won a medal in the Olympics. I guess we kinda did, so far, the Olympics of life. Hard to type this even today without a lump and a few tears.

Keep us up to date. Stay safe and keep the faith.

Nels