Hello @coachlowe. Are you saying that they never found your primary tumor outside of the lymph nodes? I have a very rare location for my SCC cancer, non hpv, in my external ear canal down by the eardrum. It had invaded the surrounding bone with no external evidence to see and caused an increasing ear pain over 5 months until finally diagnosed by biopsy. It was not visible on the CT with contrast that was done. One of my Mayo surgeons told me that cancer recurrence can have pain as a symptom, and it is a very persistent pain that does not get better. I have not had any local recurrence in 13 years, but have metastatic disease and all 4 of those incidents were found on routine PET and CT scans. With two lung mets, one on a muscle, and one in kidney and lymph nodes, there was no pain involved. I believe that the growth into the temporal bone of the skull was causing all the pain.
You certainly need more scans, and if CT is again clear, perhaps a PET scan or MRI to ensure nothing is missed. One of the many ENTs I saw prior to diagnosis said that many causes of ear pain are never found. Luckily I was persistent in seeing doctors and requesting referral until someone explored thoroughly to find this cancer. You are your own best advocate,and you call the shots so if you aren't getting answers, request a referral to a larger teaching hospital or referral cancer center. We travel 10 hours to Mayo Rochester MN for their excellent care and continue to do so 13 years into this cancer journey. Do you have such a facility in your area?