Cancer of the occipital condyle bone (base of skull): What treatments?

Hello @don49 and welcome to Mayo Clinic Connect. I am going to ask to have your inquiry moved perhaps to its own post to possible reach a bigger population of members.
My cancer was close, but in the Temporal bone which is more behind and below the ear. It started from the skin in my ear canal just outside of the eardrum and over time invaded the bone causing pain. That is when I started a 6 month journey to find a diagnosis. I ended up at Mayo Clinic in Rochester once we found the cause and had an extensive surgery called a subtotal temporal bone resection. Clean edges were not found so followed up a month later with 7 weeks of radiation and a targeted therapy of Cetuximab to increase the radiation effects on the remaining tissue. This was 13 years ago and the tumor has never returned in the original site (knocking on wood). Unfortunately I have had several metastases so now have metastatic Squamous Cell Carcinoma. All mets have been removed surgically except for the last one in my kidney. I was on a newer immunotherapy Cemiplimab for over 2 years and that has removed all evidence of tumor in kidney and lymph nodes. I have been off that for over 2 years now.
Problems were the usual difficulty eating during radiation/chemo, although no feeding tube, dry mouth forever as salivary gland also removed in neck dissection. I had total facial nerve paralysis of right side of face as that nerve was involved in tumor. Results of removing a section and anastomosing it is called synkinesis where things just don't move like they used to on 1/2 the face and mouth. Honestly recovery from the surgery wasn't east but I started to see progress after 2 days. Radiation took a few months to recover from and taste has never quite been normal since that plus immunotherapy. I'm glad to answer any other questions and I hope we can get a response from someone who has dealt with a similar location of tumor. Have you had treatment yet?

Hi @don49, I add my welcome. As @sepdvm suggested, I pulled your question into a separate discussion. Is your cancer considered to be a giant cell tumor (GCT) of the skull? Can you share a bit more about the diagnosis? What treatment plan has been suggestion for you? How are you doing?

Stereotactic radiation,5 treatments. They said a tumor, that is all I know. I am doing all right. I am a 13 year cancer survivor. Advanced stage prostate metastatic stage 4 cancer. With treatments fatigue is the hardest. Don