This all happened very fast for me. I’m a 50 yo male, I noticed some enlarged lymph nodes on the left side of neck that persisted for a month or so. Saw primary and was referred to ENT. CT confirmed 2 large nodes and a small mass at base of tongue (vallecula) about 2 cm. PET scan and MRI showed same and surgical biopsy confirmed SCC,
HPV + P16.
Enrolled in neoadjuvant clinical trial in which I was randomized to 2 doses of immunotherapy (nivolumab) 14 days apart. Day 16 had TORS which removed 39 nodes on left side of neck and the primary mass at base of tongue. 2 level II nodes positive for
HPV P16 SCC as well as the primary mass in Vallecula. No extranodal extension and surgical margins all clear so stage 1.
TORS recovery a bit rough. Lots of pain on swallowing but controlled with pain killers. Drain tube left in after hospital discharge with the plan to remove day 7. I have numbness among incision line (jaw line) and continues up left cheek to left ear. Tongue was very painful and swollen after TORS, due to pressure placed on it during procedure. Not debilitating, but not something that was expected. Just added a bit of pain to the swallowing issues I had post op. Pain regiment consisted of gabapentin, celebrex, Tylenol and Oxycodone post op. Do not allow yourself to get behind the pain. This happened to me on day 3 when I weaned myself off the narcs and I was unable to take any food or drink without extreme pain for 6-8 hours. I’m on day 5 and the pain is still intense. I was also treated with IV steroids in the hospital and sent home with a Medrol dose pack
For home. The steroids really help with the swelling.
My follow up is in 10 days. We are expecting a de- escalated course of radiation ( 5 weeks at 50 gY) but will see what the team has to say.
Wanted to say hi and see if anyone else has had similar experiences to mine. Would love to skip radiation with the negative surgical margins and stage 1 nodes but realize this may be fantasy.