I’ve been vague about why I’ve had an MRI and such, but I have contacted family, and here’s the low down.
Disclaimer: There is NO NEED to panic. NONE. No one is going to die, and it’s not a crisis.
I have two extra salivary glands on the outside of my jaw. In early 2020, I found ‘bubbles’ of backed up fluid and a small, tender lump in one of them.
It took FOREVER to get in to see my primary due to Covid for something so NOT a crisis, so I got in to see her in April of 2021.
My primary had no idea what it was and referred me to the local mouth Doctor. He thought it was a salivary stone blocking the duct and set up to have it removed in November of 2021. By this time the lump had grown so it was about 5 mm long.
When he went in, he went HMM and said he’d have to send what he cut out for biopsy. It was NOT a salivary stone. This removal included part of the nerve, so I had a numb spot on my lower lip that is still there. Part of it was left in.
I healed very poorly from this and had to wrap my cheek to hold in place long enough to heal.
Biopsy came back inconclusive but it’s a neuroma, probably a nerve sheath neuroma.
Pause here. This type of tumor is 85% of the time NOT cancerous. If malignant, removal takes care of the issue once and for all in 98% of cases, and there is no need for radiation or chemo. Plus it is one of the SLOWEST growing cancers, which if you HAVE to have a tumor during a pandemic when medical help is hard to get, THIS IS THE WAY TO GO. Super slow growing, almost as slow as prostate cancer. In the two years before remove it barely grew 3 mm.
This is NOT a crisis.
I didn’t want to tell anyone until I had an idea of A. What it actually is B. What our plan is and C. I could answer questions. The big ‘C’ word tends to freak people out, and I wanted limited alarm until I KNEW what was going on. I called family this week to let them know what was going on before I wrote this post.
Resume.
The concern at this point was that it went into my jaw which would be an extensive and dangerous surgery, plus it would cause loss of function when the nerve was removed.
Despite scheduling issues, I had my MRI on January 3rd.
It is EXTERNAL ONLY. It does NOT follow the nerve into my jaw. This indicates that removal will likely only make a large chunk of my face permanently numb but won’t inhibit any functions. We hope. Everything else in my skull was in good shape, no sign of blocked arteries, other masses, or aneurysms. I had a few ‘benign anatomical deviations’ but nothing of concern.
The next step is a consult with an oral surgeon for removal, and that’s scheduled for this coming Friday.
The plan is to remove it and biopsy what is taken out because the whole thing is less than 2mm.
It’s TINY, ya’ll.
Usually you don’t find these until they’re an inch or more because USUALLY they’re under your tongue, not outside your jaw in an easy to find place.
I want the surgeon to be aggressive in the removal because I do NOT want this to pop up again later.
Surgery is a big step because I have Ehlers-Danlos Syndrome, and we know that I will heal poorly. Hence a full consult before just going in and taking it out.
I don’t have a date for removal yet.
I’m mostly annoyed, and I don’t feel there’s cause for alarm in any of this.
Even if it’s malignant, 98% of the time removal is enough to nip the whole issue in the bud. I’m not worried about the big ‘C’, I’m worried about healing poorly. I’m worried about drooling because I can no longer feel food or spit on the corner of my mouth.
These are pretty small worries all things considered.
So, now you know. It’s not a crisis. We’re addressing it, and odds are very, VERY good that this will resolve with no further issues.
I hope you can see why I didn’t say anything about it up to this point?
The word ‘Cancer’ terrifies people, and in most cases this is warranted. In this case?
It’s not.
I’ll be okay.
My mom bought me a bib as a gag gift for Christmas, and I cracked up.
My bestie wants me to buy a bib with lobsters on it so it looks like I’m going somewhere fancy when I have to wear it. She laughed at me and told me I can’t even do cancer right with all my weird health issues. 🙂
So far drooling has been minimal, although I’ve started eating with my mouth covered by one hand since things like to… escape.
If you’ve had health issues, how did you decide when to tell folks?
