Hi, I'm Jon Angel, 66, recently retired, and very happy to be alive.
I don't remember the letters for staging, but I know it was caught early. One lymph node on the right side of my neck had swollen and felt more rigid. I went in for the fine needle aspiration or biopsy, and the diagnosis came back, Squamous Cell Carcinoma, HPV
-related and its marker (?) was P16. A PET/CT scan with contrast media showed only one spot lighting up, a small tumor in the right base of my tongue. First I had a "neck dissection" and all the lymph nodes removed. Then a week later they operated again, with a Da Vinci robotic device, and removed my right tonsil and a "divot" from the right base of my tongue. The tissue from my tongue contained the primary site, but with only a small amount of margin.
I had the frightening complication of an arterial bleed. Apparently a suture or clamp let loose 6 days after surgery. I was bringing up blood fast enough to fill the lap of my gown while sitting up in bed. I already had some aspiration pneumonia from prematurely finishing a popsicle-- they thought I was ok for clear liquids, but I really wasn't. The arterial bleed meant that I inhaled a large amount of blood, and so I was kept intubated and sedated for 5 days after the bleed was repaired. It also meant that they proceeded with the earlier plans to give me a G-tube (PEG tube)
I had 31 days of radiation, delayed by my pneumonia recovery. I've been working with superb folks, an OT on the lymphedema and an SLP for swallowing. My tongue and tissues in my throat are swollen enough that even if I regained the habit of eating and drinking close to normal, it would still be "laborious" to remain well-nourished.
I'm working hard on the lymphedema. I have a set of exercises for Manual Lymphatic Drainage, and two types of compression devices, and I still barely have it under control. It's on the right side of my neck. It's also in my tongue and throat tissues. So if I can find some great exercises for draining the tongue, externally, I will be very grateful.
many thanks, best wishes,