Hi all, I am so glad I found this site! We are new to the discovery/diagnosis of metastatic squamous cell ca. About June/July of 2018 my hubby had a lymph node pop up on his left neck. We were in the process of renovating a house and moving at the time and it was thought to be allergies or from abscessed tooth. He felt fine, same energy, weight etc. I had a thyroid goiter pop out about 10 yrs ago and talked him into going to see a thyroid specialist. He declared not thryoid, but did blood work and only abnormality was Epstein-Barr >600 and said he most likely had asymptomatic mono at some recent point and gave him a round of ampicillin x 10 days and a referral to ENT. After 10 days of antibiotic lymph node still there, hard, not tender and getting larger. ENT scoped nasopharynx and throat and found nothing unusual. She had him return for FNA of the lymph node which came back inconclusive. He then was sent for a CAT scan with & w/o contrast that showed 1 lg 3.4 x 2.8 x 6.0 submandibular mass within the Lt cervical lymph node, deep to the left parotid gland. Additional adjacent abnormal LN at level 2&3 measuring 8 mm. 4 abscessed teeth. He was sent for radiology guided biopsies and it came back as metastatic squamous cell 90%, positive for P16 favoring tonsil or base of tongue. Sent for PETimaging and no distal metastasis identified, small uptake in left tonsil. The ENT scoped again and thought the lt tonsil was somewhat friable, but not hard or cystic. She scheduled for a tonsillectomy and referral for oncologist. We started reading and of course panicked. I talked my hubby into cancelling surgery and got an appt at MD Anderson proton center. We met with oncologist Friday who also could not find primary. We had another CT scan performed and now have an apt with their HVP specialist at the Head and Neck center this Wednesday. The lymph node is huge and does not move, hard and not tender. Still asymptomatic - energy same, appetite, no sore throat even after all these scopes. No weight loss, in fact has gained weight. We don't have any staging since we don't know primary, but we do know we have regional metastasis of several nodes. Is it unusual to not be able to pin-point primary? From what we are reading, it makes the treatment harder as a larger area has to be radiated. We hope to learn primary site from the newer CT scan this week in order to see if candidate for Proton therapy. Has anyone had Proton? Sharing what we know - and don't know hoping someone will tell us if we are missing something or need to do something else? Any suggestions are welcome. We live about 1 1/2 hr from MD Anderson so felt that was our best bet for dx and treatment plan.

Husband is 63 years old, never smoked ever, non-drinker until about a year ago when he discovered good wine - about 4 glasses a month. Married 38 years and faithful. Healthy other than some periodontic issues over past 3 years. Other question is how do you get HPV without sexual exposure?

Last edited by Gigi3; 06-30-2019 11:59 AM. Reason: spelling

Gigi3