Previous Thread
Next Thread
Print Thread
Joined: Jul 2022
Posts: 6
Likes: 1
acj19 Offline OP
Member
OP Offline
Member

Joined: Jul 2022
Posts: 6
Likes: 1
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.

Joined: May 2022
Posts: 4
Likes: 1
Member
Offline
Member

Joined: May 2022
Posts: 4
Likes: 1
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


Steve - SCC survivor
first SCC dx in 2016 by oral surgeon through biopsy of leukoplakia and lichen planus; first tongue resection 2016; three resections 2017-2020; partial glossectomy & flap reconstruction 2021; newly dx SCC return + lymphovascular invasion 5/22
tx to date surgery only - no rads, no chemo; speech therapy helpful, diet limited but eating mostly works
waiting for new treatment plan from care team - looking for tx other than full glossectomy
1 member likes this: acj19
Joined: Aug 2020
Posts: 96
Likes: 15
Assistant Administrator
Supporting Member (50+ posts)
Offline
Assistant Administrator
Supporting Member (50+ posts)

Joined: Aug 2020
Posts: 96
Likes: 15
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


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
1 member likes this: acj19
Joined: Jul 2022
Posts: 6
Likes: 1
acj19 Offline OP
Member
OP Offline
Member

Joined: Jul 2022
Posts: 6
Likes: 1
a little update for the lovely people giving advice! my consultation went well! my biopsy is either going to be july 26th or august 9th depending on how quickly insurance goes through, but we're hoping for july!
the surgeon would not confirm nor deny ameloblastoma due to how quickly it showed up, he is refusing to give much info until the biopsy is done. what he did say was that a free flap surgery seemed very unlikely which gave me tremendous relief. radiation seemed pretty unlikely as well. i have no other symptoms of cancer besides the sudden onset. the shape of it resembles a benign tumor. he explained more about the location of the tumor and how it's spreading. it's not "eating at my jawbone" rather expanding inside of it making the surrounding bone brittle and frail. (sort of the same thing but it's making me feel better)
i will be getting a deep bone biopsy as well as having my wisdom teeth removed which kills two birds with one stone. i won't say im completely out of the clear until i get a benign biopsy result, and either way i'll still have to have multiple surgeries but im more confident the outcome won't be as radical. i will most likely need to postpone college though, which sucks so bad because my education is very valuable to me, but i think having a few months to completely heal from this nightmare is something i deserve. thank you for the kind replies, ive been three days tear-free and have been sleeping as well as i can! i'll update this after my biopsy results come in hopefully.

Joined: Aug 2020
Posts: 96
Likes: 15
Assistant Administrator
Supporting Member (50+ posts)
Offline
Assistant Administrator
Supporting Member (50+ posts)

Joined: Aug 2020
Posts: 96
Likes: 15
ACJ,

Some good news there. Thanks for updating us. The best was your sleeping and coping better. SOOOO important. If you haven't already called your insurance to push them, I suggest you do it. And, you may want to let them know you are keeping notes. It shows them you are preparing for any potential excuses or dropped balls. I think it helps add urgency.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Joined: Jul 2022
Posts: 6
Likes: 1
acj19 Offline OP
Member
OP Offline
Member

Joined: Jul 2022
Posts: 6
Likes: 1
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!

1 member likes this: Nels
Joined: Aug 2020
Posts: 96
Likes: 15
Assistant Administrator
Supporting Member (50+ posts)
Offline
Assistant Administrator
Supporting Member (50+ posts)

Joined: Aug 2020
Posts: 96
Likes: 15
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


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
1 member likes this: acj19
Joined: Jul 2022
Posts: 6
Likes: 1
acj19 Offline OP
Member
OP Offline
Member

Joined: Jul 2022
Posts: 6
Likes: 1
final update for everyone curious! my biopsy went well, i had a pretty bad reaction to the anesthesia but besides that the surgery was a success. they found another cyst which they were able to remove easily. they also were able to get all 4 wisdom teeth out with no issues and drained the site of the tumor a bit which made my face way less swollen. recovery sucked but im mostly back to normal minus swelling on the side of the biopsy. i had a consultation for my next steps and my tumor is BENIGN! i have an aneurysmal bone cyst, and the other cyst they removed was a benign dentigerous cyst from having impacted wisdom teeth.
i have two options here.
1. do surgery for a full excision of the tumor. this will be more destructive to the bone. they would do one internal and one external incision (i'd need to shave hair which, as a teenager, i don't really care for) and try to scoop the tumor, but because it's so much fluid they can't guarantee they can remove the entire thing, leaving a much higher chance of recurrence. i also run the risk of my coronoid process being removed with the tumor which would be a nightmare. i would also have external scarring.
2. do surgery to place a decompression tube inside the tumor and have it sutured to the inside of my mouth. twice a day, i shoot saline rinse into the tube, flushing it out and spitting out the tumor remnants, essentially draining it. healthy bone will grow around the area that is constantly being drained, making the tumor smaller and easier to fully remove. my surgeon guaranteed me it would not come back with this option. the only concern is this lasts for 6 months. then in march, i come back for removal through the inside of my mouth only.
i chose the second option mainly because it would let me go to school. im going to manage this tumor as a chronic condition for now and live my life.
on august 23rd i'll go under anesthesia again for the tube placement, and then every two
months or so they'll x-ray the tumor and see if it's ready to come out, then i can schedule the surgery during a break so i won't need to constantly miss school. i was under the impression i would need a flap, so this is..... really great.
i have a lot of feelings. i'm upset i have to have this sinking feeling for half a year. i believe draining it will work, and hopefully it'll relieve this horrible pressure on my face. it just sucks knowing i have it.
but during those 3 weeks where i didn't know if i had cancer or not, i came to terms with many things about my life and feelings. by far the hardest time of my life. nothing can compare and you never truly understand until you're in it. i am so tremendously grateful for the situation i'm in right now and more pumped than ever to fight this tumor and get it out. i am grateful i can be normal and go to my first semester of college, i'm grateful i can celebrate my 18th birthday outside of the hospital (my original surgery date was the 16th, my birthdays on the 19th.) i'm grateful these are all outpatient procedures, i'm just so grateful. it could be so much worse. i do plan on going to therapy after i get the tube placed so i can properly figure things out.
and finally, a thank you to this forum! i really needed somewhere to vent, i was horrified, and reading the stories/support of people who have been through much worse have put my situation in perspective. i appreciate it!
so yeah, last post! ever! thank y'all for supporting me, maybe i'll come back and update after my final surgery but yeah. doing bigger and better things now!! i'm super excited for the future and this was truly my best case scenario.

Joined: Aug 2020
Posts: 96
Likes: 15
Assistant Administrator
Supporting Member (50+ posts)
Offline
Assistant Administrator
Supporting Member (50+ posts)

Joined: Aug 2020
Posts: 96
Likes: 15
Dear ACJ

Thanks for the follow up. Long process but overall some really good news here. Grateful is such a beautiful word. Every day is a gift and experiences like yours are such a reminder for all of us. Please do come back and keep us updated.

Also, keep in mind that you might be able to help with advice to others. Check the forum occasionally and chime in if you feel you can help.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,853
Newest Members
KathB, Tatiana, MizLynnie, Mobob_2001, Mausumi
12,972 Registered Users
Forum Statistics
Forums23
Topics18,088
Posts196,463
Members12,972
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2021 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5