I had to request my PCP to do a PSA as it wasn't standard practice. I had to call the urologist, who I originally saw, after I joined this board and knew I should be starting ADT, even though they hadn't two months after my scans showed Stage IV. I saw the surgeon even though it was Stage IV and wasn't directed on an oncologist, only their radiation specialist in the clinic. I have been very pleased with MD Anderson and feel the care is good, but on a follow-up scans last November it showed I was NED for Prostate CA, but had a nodule on my thyroid. My oncologist didn't say anything after my immediate follow-up so I inquired about it last month. She agreed a Ultrasound was next plan. I had the ultrasound, followed up with the online reporting and called when it hadn't been read for 2 days. I was told 7-10 days for routine US. I notified the oncologist and requested a stat read, my request wasn't read by the oncologist office for 2 days. The US resulted Friday morning and had 2 Tirads 4 nodules, biopsy recommended. I called the oncologist office to inform them the results were in and wanted the order for the biopsy. They called me back 6 hours later and wanted to give me the results. I said, yeah, I know what it says. Now I know the possibility of thyroid cancer is low and treatment is pretty much effective if identified, but over the last few years my experiences with healthcare is definitely frustrating. I'm an RN, I know the system. I feel for patients that don't know to push.
All I am saying is fight, fight, fight for your care.
Written by
Vangogh1961
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It really is so frustrating, as a layman, having to constantly research and ask questions only to get poo pooed by your medical oncologist who is making half a mill. Where is the care, concern and professionalism? I feel like just another cow being run through the shute. Initially I was told, “you might have some hot flashes”, then when a multitude of side effects set in and I ask about it and what I can do I’m told, some people can’t handle it and quit. You can quit(ADT) if you can’t handle it! What little faith I had in allopathic medicine is gone. Just going through the motions at this point and wondering why.
I am disappointed in my prostate cancer healthcare, too. At age 78 U had to ask my PCP for a PSA test. That led to a urologist's nurse who informed me I needed a rectal biopsy with Lidocaine jelly. Instead I went to an oncologist to did a perineal biopsy in hospital. He did not tell me it would be done under direction by a class of interns, so I wonder if my Gleason 3+4 is correct. That doctor wanted to do surgery, so I went to a medical oncologist who referred me to a radiation oncologist. The RO was expert in head and neck, but had done few if any prostates. After the radiation, the MO described something offensively called hormone therapy as optional for my age, so I passed on it.
The MO referred me back to my urologist for follow up. When the PSA began doubling and a scan found mets, the urologist said I might avoid hormone therapy if I took pelvic radiation from his firm, which I did. When the PSA eventually rose again, I insisted on Orgovyx because I heard it had mild effects, and then added Abiraterone.
So the PSA is finally in the low zeros, but I have cancer still growing in the prostate, with mets to pelvic and abdominal nodes. Perhaps if radiation had been more successful, and I had been told to take ADT from the start, I might have had a better outcome. Maybe if I had gone to a Center of Expertise at the beginning, I would not be Stage IV now.
Ha...Definitely feels that way sometimes.... I've been dealing with this Just since december..... Diagnosed gleason nine in Jan 24...with spread... My Urologist put me on adt... Told me I wouldn't be dying of prostate cancer anytime soon... And sent me on my way...I on my own... Went to an MO.. An RO... Did my own research on diet exercise... Alternative Stuff.. And my wife is ... Let's just say... A bit pushy.... It does help to make yourself available for any day anytime...Any location a doctor works at... And make them look up appointments and such While you're on the phone with them.... And confirm appointments immediately... Don't allow them to not follow through... Get in your insurances faces...
They kept telling my wife... Well, this isn't on the list of Urgency treatments... I think one day she called the insurance company twenty times until she got the answer that she wanted...
Advocate for yourself... No one else is gonna do it for you.... Stay healthy everyone...
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