Hello @alexandra24 and welcome to Head and Neck Connect. Also sorry that you need to be here, but we can offer support to help you get through this. I know your cancer is a rare one and hopefully others will chime in with their experiences.

My SCC of skin origin began in my ear canal near the eardrum and invaded into the temporal bone of my skull. I had surgery at Mayo Clinic with partial parotidectomy and neck dissection and margins were not clear. The followup was then radiation with a targeted drug to sensitize the tumor cells to the radiation. That was started 5 weeks after surgery, delayed due to logistics. SCC is not particularly sensitive to radiation unless it is HPV associated, which mine was not. I have not had a recurrence at that site in 13 years. I have had 4 metastases which have been dealt with surgically, and the last one by Immunotherapy.

My advice is to ask for referral, even by videovisit, to a major referral cancer center where they have the most experience in rare cancers. It sounds like you may have done this already. If radiation alone does not offer a good prognosis then I would be seeking out a surgeon with much experience. My surgery and recovery were not fun and games, but it was certainly better than having a cancer growing into my skull. Radiation and chemo were the tougher part of the whole treatment.

Is your medical team already a part of a large referral center? Have you asked about complications of surgery ? Have they discussed following surgery with radiation if margins are not clear? Having a rare cancer means there is less information available to help you and your medical team make decisions. Be strong and you will get through this.