Long term followup
I am 14 years post treatment and the radiation fibrosis and mucus just keep getting worse. I love my primary care physician but she is often referring me to other docs who really don't have the knowledge or experience focused on radiation survivors. I am seeing a rehab doctor to get botox injections for the fibrosis but he does not know about handling the mucus and coughing. My new ENT wants to talk allergies which is not my issue. Same with the pain specialist that wants me to try cortisone injections again.
My question for other long term survivors is who do you see that is able to understand the big picture? On other forums, I see folks who still see their oncologist long term but both of mine have retired and neither local cancer center seems to have anyone who sees patients after treatment. All of their long term care is about counseling or nutrition.
Right now the hope on the horizon is a referral to the Mayo Clinic for a possible surgical procedure that seems promising. I will fly out there in August for an evaluation.