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Advocate!! I finally did and now have a chance
Being my own advocate does not come naturally. I was brought up to be thankful for what I had and not complain. If I go to a restaurant and the service is slow, the food is undercooked, and the order not quite right, I tend to just shut up and eat it.
Twice in my life I was fired unjustly, and I just politely went away without complaining.
This type of attitude could kill me! Thanks in part to my wife's nagging, and thanks in great part to my newly-acquired Medicare (don't get me started on how loathesome private insurance is in the U.S.), I finally went to Mayo in Rochester and verified that my two local doctors are, in fact, totally incompetent. I have a chance now of getting rid of my persistent cancer, or at least having the most quality years possible of remission.
It was an eleven-hour drive one way, and I look forward to making this trip many more times, if necessary, in the future.
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Glad to hear that you found good care. What is your cancer story to make more sense of your post.
Hi @topf,
I'm sure bluegill will reply, but something I have found helpful to learn more about someone's cancer story, is to click on the blue link with their name at the top of the post. This takes you to their bio. Many of us post details of our cancer journey there. Otherwise, on the same bio page is a list of their posts/comments showing the most recent at the top. You can often find details of their cancer journey in one or more of their oldest posts. Or, asking as you have is always a good way to begin a dialog.
Bill
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3 ReactionsIn 2020, at age 60: PSA of 28, Gleason 9. 5 weeks radiation + 3 years ADT (Eligard). After pausing Eligard, PSA rose quickly from 0.06 to 2.0. Back on Eligard Dec. 2024, PSA still slowly rising. Apparently my urologist's plan was for me to slowly die. Now I go to Mayo. HDR brachytherapy planned for June.
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3 ReactionsGood for you! My motto is "polite but persistent" — I'm never rude or confrontational with my heathcare providers, but like many fellow Canadians, I may be smiling and saying "sorry" too much on the surface, but underneath I'm stubborn as H-E-🏒🏒 until I get what I need (in all parts of life).
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5 ReactionsYou still have your prostate and they couldn't figure it out. Wow, glad you got to Mayo! Good to know as I go medicare in June.
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3 ReactionsThanks, I was not aware. Still a newby on the journey no one wants to take.
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1 ReactionDid you do a PSMA to check for spread? It would be good news if the tumor is still localized.
Yes, according to PSMA it has not yet spread.
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2 ReactionsAt the age of 60y, was that your first PSA test or had you been tracking your PSA for a decade+? Did the PSA jump to 28 suddenly or was it a slow increase over many years? Much goes into that initial treatment decision.
I’m sitting here shaking my head….as chippydoo pointed out, didn’t your urologist or the treating RO even THINK to look at your prostate with a tracer to see activity?? After all that time on ADT??
Geez, that is so bad…glad you’re on the right track!