Connect
Diagnosed /w Ameloblastoma. Young Adult
It originally started as a benign tumor located near my impacted Wisdom teeth, which were promptly worked upon and 'taken care of'. Afterward, they looked into it and monitored me to see if there was any recurrence. Only to confirm with a cancer institute that this was Ameloblastoma and that I would be receiving a major surgery within this year. I feel scared and numb. I am 24yo, female. I'm afraid of so much going wrong. I want to know if anyone else is experiencing this too or has so I can feel less lonely.
Like
Helpful
HugInterested in more discussions like this? Go to the Head & Neck Cancer Support Group.
Connect
As most here are aware, I chose conservative treatment the first time back in 2007 and have been satisfied with the outcome. I'm now on targeted chemotherapy, which has been slowly shrinking the recurrence. I suggest reading both this thread and the other ameloblastoma thread to get more details, then please ask questions!
Be prepared for it to take a long time to get a diagnosis from the biopsy after the original pathologist refers it to a specialty pathologist.
One caution: While doing your research on ameloblastoma and finding a top tier facility/doctors for treatment - I would not make any solid plans until you have a confirmed diagnosis from the biopsy. It is typically a very slow growing cancer and I am a proponent of evaluating all the options.
-
Like -
Helpful -
Hug
1 ReactionHi @momofj, here is more information about requesting a second opinion from Mayo Clinic for your son. http://mayocl.in/1mtmR63
- Ameloblastoma care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/ameloblastoma/care-at-mayo-clinic/mac-20351281
Mayo Clinic Children's Center and pediatric specialized care is located at the Minnesota campus https://www.mayoclinic.org/departments-centers/childrens-center
Did the biopsy results confirm your son's diagnosis of ameloblastoma?
Hello,
I had ameloblastoma with fibula-free flap. Recovery took over a year and standing causes some circulation issues. Over time it improved. I don’t do any exercise with any sort of impact and I do wear a compression sock if I have only feet for an extended period of time.
-
Like -
Helpful -
Hug
3 ReactionsCan you talk about your jaw recovery for eating, talking and such? Do you mind sharing about how old you are?
Thank you!
I was 28 when diagnosed. When removing the ameloblastoma they had to remove 2 molars as well. I only chew on the non-surgery side. I do get some jaw pain here and there.
Are there any other people here that have had ameloblastoma removed with free-flap surgery and reconstructed with their fibula….what kind of follow up testing do you have done since your surgery? CT scan? MRI? Both? With or without contrast? Or both? This would be very helpful for me to know.
Hi Kris,
I have had the surgery but not for Ameloblastoma. It was due to osteoradionecrosis. Anyway I have yearly CT scan without contrast and a good check over by the surgery staff. This year will be five years out from surgery. Other than that, I am doing fine aside from some recent foot pain on the cut leg.