Esthesioneuroblastoma

Posted by k1e2n3n4e5t6h7 @k1e2n3n4e5t6h7, Feb 7, 2023

Anybody out there with this? Had endoscopic surgery w/a craniotomy last April supposedly with clear margins at Kaiser Sacramento but felt I haven"t really had a lot of info given to me on it. What am I looking at going forward?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 7, 2023

Welcome @k1e2n3n4e5t6h7. I moved your post to the Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/

I'm tagging @jessskoldal who also has esthesioneuroblastoma. You can read some of her journey here:
- Head & neck radiation side effects continue, especially swelling https://connect.mayoclinic.org/discussion/head-and-neck-radiation-side-effects/

Did you have additional treatment after surgery? How was/is recovery post endoscopic surgery and craniotomy?

k1e2n3n4e5t6h7 | @k1e2n3n4e5t6h7 | Feb 9, 2023

In reply to @colleenyoung "Welcome @k1e2n3n4e5t6h7. I moved your post to the Head & Neck Cancer support group here: https://connect.mayoclinic.org/group/head-neck-cancer/..." + (show)

I had i week of radiation but developed thrush that I couldn't shake so I told the radiology team I was stopping radiation after speaking with my dentist who had talked about all the problems I would probably incur. They didn't like this decision but I am at peace with it knowing full well that I just may have shortened my survival time. Why prolong one's life if the quality isn't good? My life partner of 53 years is right with me & do I ever love her!! This is my 3rd separate area cancer bout & the journey continues.