Advocate!! I finally did and now have a chance

Posted by bluegill @bluegill, Apr 10 7:36pm

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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

brianjarvis | @brianjarvis | Apr 12 6:53am

Not being your own advocate is problematic - not just regarding prostate cancer, but life in general. That applies whether you’re buying a house, a car, food in a restaurant, getting a job, or making a medical treatment decision - especially for prostate cancer.

It’s not about complaining; it’s about making an informed decision on whatever treatment (or service) you’re getting in the hope of attaining a better outcome. (Even with private insurance, my experience has been positive - but that takes being an informed, proactive, and self-advocating consumer.) That’s the way the world is these days.

In my case, I first heard about prostate cancer and PSA testing in 1995 (at 40y/o) and committed to start getting annual PSA tests at 45y/o. So, it wasn’t a big shock to me in April 2012, that my urologist told me that my “blind” biopsy showed prostate cancer.

From there, it’s been a journey of self-education, self-advocacy and over a number of years, finding a urologist, radiation oncologist, medical oncologist, and being actively involved in shared decision-making.

Only you know you, so strive to get the best treatment possible that’s inline with the quality of life you expect.

bluegill | @bluegill | Apr 12 8:58am

Yes, I'm very happy that I'm finally getting good care. Hopefully, it's not too late.

About getting PSA checked: I dropped the ball. I got it checked about 10 years ago, and it was about 2. Then, the next year, it was 2. Then, my doctor retired. I remember mentioning to my new doctor that I needed some kind of blood test (I couldn't remember the letters P-S-A), and she said "yes, we'll do blood work."

I assumed "blood work" or a "blood test" checked everything. How was I to know? No one ever told me there are different kinds of blood tests.

Then that doctor moved away, then Covid came. Well, I certainly wasn't going to look for a new doctor during Covid. But, then I got symptoms, I got scared, and I managed to get a new doctor, who asked me when my last PSA test was, and I said "What's PSA?"

OK, I can blame all that on a brain injury I got in 2006.

To make a long story short, in the 3-4 years that I didn't get a PSA test it went from 2 to 28.