Welcome Gigi13,

I’m sorry for you troubles! This is the best patient/caregiver site around. I’m not sure if the percentage is, but unknown primaries do happen. Usually they’re found during a biopsy under anesthesia. A few may never be found, but they look to the tonsils/base of tongue for the primary, which are most often there. If it’s not locared before treatment they treat it as an unknown primary, which may consist of treating a larger area than if it was known. I had a known primary in the tonsil.

I had Proton Theraoy in 2015 to a small portion of my left neck where there was a recurrence, my 7th, in the left neck level IV and V. At the time, you had to have a certain type of head and neck cancwr, like brain stem or otherwise had to have a recurrence. Now I believe it’s fitting for most Head and neck cancers . There are about 27 Proton Centers throughout the U,S . I had maybe three location to zap, but sometimes that took 30-45 minutes due to proper body positioning, and changing you position. There are newer type of protons called IMPT, Intensity Modulated Proton Therapy, that changes the Proton callibrariob setting and camera position, so it would be faster as My three zaps only tool 2 minutes, is silent, and fast, but most often took longer. I couldn’t see it doing like my first radiation with IMRT with 17 zaps, which took 15 minutes

p16 is a surrogate marker for HPV, which can be gotten 20 years ago or more, hidden, and resurfaced now as cancer. Most of the HPV reheated Cancer are found in the oropharynx in the tonsil or base of tongue. It’s actually a better type of cancer cancer and prognosis.

Anyway, you’ll find out more during your doctor visits.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs