Casey, the question I believe you are asking is if any of the oral cancer survivors here have experienced severe swelling of the tongue as part of their personal cancer experience. My answer is that I have not, nor have I heard of that happening to anyone here, as far as I can recall.

Keep on the doctors. Many of us spend quite a time being diagnosed. I don't believe anyone spent 5 years, though, and if it was tongue cancer, my personal opinion, not medically, is the cancer would have already spread throughout the body and you would have more issues.

I hope you find some answers sooner than later. Good luck and best wishes.

SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023