No more ADT!!!

[Still_in_shock]

Went in to UCLA for a consult, and get my Lupron shot to complete the 3 years.

Dr Matthew Rettig, the Medical Director, Prostate Cancer Program of the Institute of Urologic Oncology at UCLA says no more Lupron!!

RALP 7 years ago.

BCR 3 years ago with 1 internal iliac lymph node.

Just finished 2 1/2 years Lupron 2 years Abi/Pred. With 33 days WPRT inside that timeline, Im done!!

Based on 6 PSMA scans showing positive shrinking with ADT, and rapid disappearance after RT, clear for the last year, with <0.02 PSA since starting ADT.

Let's see what PSA looks like in 3 months. Lets see if I can get testosterone back, as he said, will take time.

OH, and he refuses to order Ultra Sensitive PSA!!!

Thanks for the rec, TA!!

[Tall_Allen]

I met him a couple of times, and both times, I walked away smarter than when I arrived. He devotes a lot of time to the VA, so it is often difficult to get an appointment - but worth the wait if one can wait.

[Still_in_shock in reply to Tall_Allen]

I made the appointment 3 months ago!! While I was still with Kaiser. This is my first month with Medicare A B and G!

Next in 3 months, this time mid day, not at 4 PM, thats new patient slot. Trying to get out of Westwood, heading north with Castaic fire, took 2 hours to get home to Granada Hills.

His comment, if it comes back we get you a PSMA, and hit the spot with radiation! We have great radiologists here!!

You aren't going to die from this disease, I actually believed him.

[Xavier10 in reply to Still_in_shock]

That is a really confidence inspiring thing for him to say. "you are not going to die from this disease." I like that.

[Still_in_shock in reply to Tall_Allen]

Dr Rettig also sent a request for my RALP surgery pathology samples from Kaiser to run:

"Somatic sequencing of radical prostatectomy specimen at Kaiser through Tempus."

IF any future treatment options might be needed.

Kaiser gave me the runaround in the past.

Also seeing a cardiologist thats running a battery of tests to see if Zytiga caused heart issues, as I only had 1 Afib attack, and no more after stopping Zytiga. Which Kaiser refused.

Gotta love Medicare!!

[Don717]

I don't get the "refuses to order USPSA test" comment? You were already measured at .02...isn't that USPSA? Good luck on getting your T back sir!!

[Still_in_shock in reply to Don717]

The UsPSA and testosterone were done on my dime through Ultalabtests.com , especially to observe the actions of stopping Abi/Pred due to heart issues. Kaiser wouldn't do UsPSA either.

[Laguy01]

congrates. I could mot tale abi/pred. It messed with my liver to much. I am on Lupron and completed proton radiation. I am waiting on follow up scams in March. I still hurt alittle in my groin area some times. I hope it is scare tissue and mot something more.

[JWS13]

T Back...that's a joke...TRT

[Still_in_shock in reply to JWS13]

Word!!

[PSAed in reply to Still_in_shock]

After 2 years HT (Lupron ) and 5 or 6 weeks of EBRT, my T came back a few months later. Hopefully yours will too. Best wishes.

68 years old

[dmt1121]

Congratulation!

[Cyclingrealtor]

Similar journey's but mine was condensed. RALP (9/21), 8 months later BCR, PSMA showed a deep right iliac obturator lymph node, 33 rounds of EBRT with 24 months of leuprolide and 18 months of abiraterone. Stopped the leuprolide and abiraterone at the end of 06/24. My latest T was 35 and my psa has been at < .006 since I started paying for it back in 8/23 as Kaiser Permanente only uses .X

I only had 1 PSMA test and they say that as long as I am "undetectable" no further imaging is noted.

Why so many PSMA tests? Just observational or confirmatory testing?

[Still_in_shock in reply to Cyclingrealtor]

Ive been following your progress seeing similar.

Only 1 with Kaiser?

Since my PSA dropped to undetectable in 3 weeks, we weren't chasing PSA, but the result of ADT and RT to the lymph node itself.

[Cyclingrealtor in reply to Still_in_shock]

IMO Kaiser Permanente is the testing grounds for "cost saving studies" for the "value-based" care that's part of the Affordable Care Act and the Accountable Care Organizations to create "standardized practices for chronic disease management". It's ALL about rationing care to save money. So, yes, only 1 psma pet that I had to advocate for. The RO just wanted to perform blind salvage radiation. I requested a second psa test and because of the jump he ordered the psma.

But who knows if the RO actually hit the known lymph node because 30 rounds into 33 I was reading the RO's notes and it stated extra boost to the LEFT side iliac obturator lymph node and albeit the lymph node was on the RIGHT! Supposedly it was just a typo!

Kaiser Permanente is about patient throughput and cost savings!

If you're not a strong advocate, you're subject to mediocre care that may be flawed.

In fact, a friend just left KP in October and switched to Sutter Health. Had pain again for her "kidney stones" that KP had been treating for the prior 18 months. Sutter ran some new imaging. Cancer (10 cm) around her aorta, appendix and ureter, somehow KP docs missed all of this on their imaging Sutter reviewed. She just had surgery at UCSF and is recovering.

[Still_in_shock in reply to Cyclingrealtor]

I agree with your statement. Ironically, I received 6 PSMA scans over 2 1/2 years, and 2 of those were after a clear (NED) PSMA scan.

Another Kaiser point: The cardiologist just handed me some pills, and said see you next year. Traditional Medicare at UCLA, I just had a nuclear cardiac stress test (its like a PSMA/PET for the heart), and a Cardiac echo.

[Cyclingrealtor in reply to Still_in_shock]

SIS - That is what it's all about. Most people don't understand the radical healthcare reform of the ACA: cost-containment and patient throughput.

Google the "ACA and Accountable Care Organizations" and cost savings and capitated payments, etc. Because KP is an HMO they are already considered an ACO by design.

Listen to talks from Kaiser Permanente Dr. Robert Pearl and his points that the healthcare system is run by your primary care and not through specialty practices; "evidence-based medicine" helps limit people from seeing specialists (like urologists) and that saves billions of dollars.

We are moving towards a "for-profit" standardized care socialized medicine healthcare system with rationed care. When "they" (haven't figured out who makes that determination) decide they have enough evidence and the acceptable "clinical pathways" they will make a new recommendation. Until then we have to encourage men to screen early so they have the option how to manage their journey and not get rolled into "the systems" plan for you.

Patient throughput vs individualized care. Just like I am sure if you have KP you know that you have 15 -20 minutes with your doc - even discussing prostate cancer!

A pill for the ill helps with patient throughput, cost-savings, "better stewards of resources" and drug profits. Factory medicine!!!

So, yes, KP would not run the confirmatory/ investigative imaging you had through UCLA. Unnecessary and wasteful spending in KP's world.

In fact, I had this very discussion with my RO on a lung nodule on my psma. It was noted on the psma results.

RO says "it's probably nothing"!

I said is "probably" a medical term? Well no.

So being that I have cancer that has escaped the prostate and in a lymph node after RP, I made sure that we had some confirmatory testing to verify the medical term "probably". And there was no change in size.