Hello BellaB,
You should have lots of hope yet still, don't disparage just because it is cancer. Not the results any of us would want, but you have lots of good options and well trained medical professionals available.
I would start by saying it is not necessarily the case it is a situation of misdiagnosis and missing the cancer (unless your doctors have said as much). There are multiple conditions in the oral cavity that are pre-cancerous and are what they call "potentially malignant disorders" or what they used to more commonly call pre-cancerous conditions.
So my tongue is a good example. Dentist found a white lesion that didn't go way, like 5 years ago. She had me come back in two weeks, it was still there, she gave me a consultation to my first oral surgeon. Was delayed getting an appointment due to Covid pandemic. I think it was 6 months or so later when I saw the oral surgeon. He did my first biopsy on the white patch (fancy word is leukoplakia).
The biopsy indicated the tissue contained cells and sections of tissue that were diagnosed as having moderate epithelial dysplasia.
Oral epithelial dysplasia is a potentially malignant disorder. It doesn't mean that these tissues were destined to irrefutably become cancerous, just that the relative risk of a cancer arising in that area of tissue is significantly higher than the general population and healthy tissue elsewhere in my particular mouth.
From what I've read chronic inflammation is also considered a potentially cancer triggering situation.
So you can have what was a benign inflammation or disease state, over time progress into pre-cancerous (or potentially pre cancerous) conditions, and that can migrate into cancer.
Comprehensive Cancer Center (CCC).
"There are 72 NCI-Designated Cancer Centers, located in 36 states and the District of Columbia, that are funded by NCI to deliver cutting-edge cancer treatments to patients. Of these 72 institutions:
8 are Clinical Cancer Centers, recognized for their scientific leadership, resources, and the depth and breadth of their research in basic, clinical, and/or prevention, cancer control, and population science.
57 are Comprehensive Cancer Centers, also recognized for their leadership and resources, in addition to demonstrating an added depth and breadth of research, as well as substantial transdisciplinary research that bridges these scientific areas.
7 are Basic Laboratory Cancer Centers that are primarily focused on laboratory research and often conduct preclinical translation while working collaboratively with other institutions to apply these laboratory findings to new and better treatments.
Most of the NCI-Designated Cancer Centers are affiliated with university medical centers, although several are freestanding institutions that engage only in cancer research.
At any given time, hundreds of research studies are under way at the cancer centers, ranging from basic laboratory research to clinical assessments of new treatments. Many of these studies are collaborative and may involve several cancer centers, as well as other partners in industry and the community
."
https://www.cancer.gov/research/infrastructure/cancer-centers
