Connect
Treated for clivus chordoma: Fear of recurrence is taking a toll
I’ve had two major clivus chordoma surgeries. My last surgery was in October 2025. After that surgery, I received hypofractionated stereotactic radiation therapy. This radiation therapy normally consists of 35 sessions, but I received it in 7 sessions. Right now, I’m doing well aside from some numbness and tingling, but the fear of recurrence is taking a heavy psychological toll on me. Is there anyone who has information about the recurrence patterns of clivus chordoma or who could share their experiences with me on this topic?
Like
Helpful
HugInterested in more discussions like this? Go to the Sarcoma Support Group.
Connect
Welcome, @omerercan. I'm tagging fellow members like @nospilmusics @bobisaacs @jack78 and @mentonette who have experience living with a chordoma,.
I'm glad to hear that treatment has been successful. But I can understand the psychological toll that fear of recurrence can have. It's hard to ignore it looming large.
It can help to talk to someone who understands the cancer experience like an oncology social worker. Oncology social work is an often overlooked service offered at large cancer centers. You may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/
Omerecan, how long ago did you complete treatment? What things do you enjoy doing?
Omerecan have you visited the Chordoma Foundation’s website? I find it a very useful resource for support, information and news about research and ongoing treatments for our unique disease. Fear of recurrence is a real thing, especially with chordoma. I allow it to creep into my psyche for bits at a time but have learned to dismiss it; not completely but manageable. Every day is a gift, enjoy yours today!