I got a metastasis diagnosis in June in Florida, and I was referred to Orlando. Since I got here, I've had multiple appointments with the radiologist, surgeon, and oncologist, but I’m still waiting for the next procedure, as all of the appointments have been only informative with no action at all, even though I already have all the required exams and tests. The surgeon asked me to undergo a PFT exam, but it still hasn’t been scheduled since October 20, 2025
Is it normal for them to take all… read more
Firstly, welcome!
Have you had biopsies on the tumors? Where do you have tumors?
Do you have pain caused by any of them?
The reason I ask is that with metastatic disease, 1st-line treatment is systemic. That means either chemotherapy, immunotherapy, targeted therapy, or any combination of the three. Surgery and radiotherapy are only used to relieve pain caused by a tumor pressing on another organ or the ribs. They do nothing to stop the spread of the cancer.
Your oncologist is the person you need to press. Everything should go through him/her. You have to advocate for yourself. If you can't get any movement out of your oncologist, you might involve the clinic's Patient's Advocate.
If you don't mind sharing, tell us who you are seeing or where you are being seen.
It took me complaining to the Patients Advocate when I was first diagnosed, but that was right at the beginning of COVID. I know I was frantic over the delays.
Try to maintain a positive, hopeful attitude. Anti-anxiety practices help to calm the nerves, which helps physically and mentally. A strong faith does as well!
Tony
Definitely does not seem normal. Who is coordinating your care? I'd call the surgeon and ask the PFT be scheduled ASAP. And the oncologist brcause it serms they should be making a chemo plan. I'm sorry that you have the additional stress of waiting.
I am fortunate in the fact that my pulmonologist set up everything with a week after finding my cancer had recurre6d in the same lung, different lobe. The testing and game plan was in place within 4 weeks. Please advocate for yourself and seek additional professional advice.
Take care!
Not normal, after waiting 2 months I transferred to a different hospital, it's an hour away but my treatment started within a week.
Hello Ivonne,
One of the most frustrating parts of this process is appointment scheduling, especially in the beginning. To get things done, you'll have to ride 'em like a racehorse, not the doctor - the head of scheduling. If they say they'll schedule you for a procedure and you haven't heard back within 72 hours, call them. If you have to contact that department every day, so be it. This is your life, not theirs. Hope this helps.