Hello BellaB,
Welcome to the forums. Sorry for the unfortunate complications with your gums and the surgeons concern it may be something so nefarious.
The best nugget of advice I gathered (and that I can currently recall) on these forums, regarding waiting on a biopsy result is "it's not cancer--until it is". That is it's natural to be concerned and worried, but try your best not be consumed by anxiety. Even if it turns into being cancer deal with that, IF, and when that comes. Regardless you will want to remain vigilant with after care and follow up. Sometimes non-cancerous conditions can develop into cancer too.
Even if it is cancer, like Nels said the treatments have advanced.
The symptoms vary widely from person to person.
For myself and many others a painless, non-healing lesion. Mine was just small pencil eraser sized white spot. Was just dysplastic tissue on the first biopsy (potentially pre-cancerous condition). Then like 4 or 5 years or so later the same area became sore. That triggered the second biopsy that found cancer.
For me so far, it was just a very minor partial glossectomy (very small chunk of my tongue taken out around the biopsy site to ensure wide margins of non-cancerous tissue).
I have bimonthly follow ups, in fact go back this Wednesday to see the cancer ENT surgeon who did my partial glossectomy.
The Gold standard on any non-healing oral lesion is a biopsy.
You can't tell just by looking at symptoms, or even pictures or physical examinations.
Anything that might be cancer, needs to be biopsied to see if it really is.
My first oral surgeon kind of reluctantly performed the biopsy, suspecting merely non-dysplastic leukoplakia. But the standard of care is if it does not go away in 2 to 3 weeks biopsy it.
He was greatly surprised when the biopsy came back moderate epithelial dysplasia. All that to say is that it's all about the biopsy.
I will say one thing that reading other's experience on this forum has done as instilled in my mind a vigilance to try and keep on top of this disease early and aggressively.
Regarding delaying biopsy and not following up on your symptoms sooner, again it is not cancer until the biopsy says it is (meaning no one can know until you have biopsy results).
I had a similar thought regarding my sitution when my tongue began hurting off and on around May 2023. I made an earlier appointment to see my oral surgeon in like Sept 2023. He could have biopsied it then, and offered to, but I was not expecting to need a ride home etc.. when I went in for the office visit. We opted to wait and see and did another appointment in Dec 2023. Got the biopsy results back like Jan 2 2024, it was in fact an early cancer.
So hindsight being 20/20 I would have pushed to have my lesion biopsied back in like June 2023. May have just been carcinoma-in-situ then. Mine was staged a micro-invasive stage 1. Just a bit past carcinoma-in-situ. For me the outcome probably was not affected that much at all.
Also anxiety is not good for your health or recovery from cancer, so one thing you can try now as you wait is figuring out ways to reduce your stress and anxiety, or how to live and cope and do what you can to reduce your stress/anxiety.
So you if you've done a bunch of reading on the forums and already have a good idea of some of the things you want to apply, you may want to give yourself a break from reading up until you get a diagnosis.
One determination I made after reading on here, was that if my dysplastic lesion ever became cancer, I was committed to going to a Comprehensive Cancer Center (CCC) and one with a high quality oral cancer program.
The oral surgeon who found my cancer was very supportive of me seeking care at a different institution and even recommended a specific surgeon he knew there.
For me, so far, the CCC provider hasn't been super crucial as of yet, but now I am an ESTABLISHED PATIENT, being watched like a hawk.
Should my disease progress and I need Chemo/Radiation I know the multidisciplinary approach of a top notch CCC is right there, and I already have my foot in the door, and that gives me good assurance I am well situated, "armed and equipped for battle" as it were, should the need for further "battle" arise.
Best wishes for good news on the biopsy and resolution of your oral health problems!
Take care,
Chris
