Hi Laura,

Thank you for greeting me here!
Short answer, all my recurrences were found through more surgeries. I had 9 surgeries in a years time, and it's still not over. Unfortunately...

I was actually shopping for my next puppy, when my cancer became apparent. I was talking to Doberman breeders, for my next male puppy.
Laura, I had intense, "shocking" pain in my head, up into my ears. But first, I had other symptoms that I ignored, like the increasing immobile tongue. I could no longer extend the tongue....
I began to lose weight, dramatically.
The day I had Gastrostomy surgery to place my feeding tube,, I weighed 67 pounds.

On the day of my surgery (described in my intro)---- I was 64 pounds. That's no misprint-- 64 pounds.

But back to pre diagnosis-- I began to have infections. They felt like ear infections, but they were actually airway infections. The tumor grew so large, so fast-- it was blocking my airway. I began to produce copious amounts of phlegm, like someone with Cystic Fibrosis. I took 4 rounds of strong antibiotics, with no effect.
I had to sleep almost upright, because of choking on it. It had to change pillowcases everyday, because of this!!
Then one night, in bed I became short of breath-- literally gasping for breath. I almost called 911. But instead, battled through it. I was admitted the next day.

I knew it was cancer, when I went to see my ENT, who has been my doctor for 26+ years now. And he is a widely known, internationally known Head & Neck oncology surgeon.

Mine grew so fast...within a month of seeing only 1 centimeter of it ( visible)-- it grew to the 6.3 Centimeters monster, literally Starving me ( I could no longer eat) and starving me of Air.
I was Gray colored, on day of my 7+ hour surgery, with 5 surgeons. I required blood transfusions, during the surgery. And I was 64 pounds!!

Recurrences-- all mine were found Surgically .
5 months after the above surgery, my surgeon decided to go back in to try to make my Free Flap mobile. See, because most of my tongue was excised ( 3/4 of it gone)-- he built me a Microvascular Free Flap from Scapular muscle --- because I was 64 pounds, he couldn't find any thing to build it from... But he decided on a 16 Inch incision from my back, under left shoulder. 16 and 1/4 inches, my nurses measured it for me!
Anyway, this new "tongue" Does Not Move. I cannot move it, cannot lick my lips...can not move solid food, etc.
So 5 months after surgery, he went back in....and every other little piece of tissue that came out of that surgery ( he submitted all for biopsy)-- were SCC.
Also, .....I had had a Benign Lip lesion ( it was a squamous Papilloma,) and my dermatologist asked my surgeon to shave it down.... No, he decided he didn't like the look of it, so he cut it out.
Ok, up until then, my dermatologist had been injecting it with chemotherapy Methotrexate. Because we feared it would evolve.
Too late-- it was Invasive SCC with Deep Positive Margins.

That was October 2017 ( My SCC Tongue surgery April 25, "2017, just months earlier). From October to December, I had produced even more recurrences. The worst was a new Ulcerated 1 Centimeter Invasive SCC tumor, with Positive Margins, base of tongue, extending down to my Supraglottic Larynx.
( Plus, he went even deeper through my bottom lip, down into chin and even horizontally through my chin, trying to get clear margins, but could not!!! It was still Invasive SCC, with Deep Positive Margins.

He was devastated.

Now, I am 11 months post radiation, and down beside my vocal cords is a new bleeding mass, that just came back pre-malignant .
It's in the Piriform Fossa, a little recess cavity beside the vocal cords where 70% of all Hypopharyngeal cancers arise.

In light of all my recurrences, especially that last base of tongue one, which extended down my throat-- and the fact that I am Immune Deficient_------- my people are worried. One surgeon is already talking to me about Skull Base surgery.

Immune Deficient??? YES, I was born with a Genetic, Primary Immune Deficiency.

Every 28 days, for the past three decades-- I go into the hospital and receive Intravenous Immune Globulin. I've done it for over 30 years now.
In fact, I am admitted this Thursday for it. It's an all day infusion in the hospital.

My SCC is an Invasive strain, Laura. And my doctors know it is made more aggressive, because I lack an immune system to detect it, or to kill it.

I have a distinct disadvantage.

Sorry to write so much!

Crystal