Veterans , How does V.A. treat you & your prostate cancer .?

[reconjj]

Im just wanted to know if you all are getting the cutting edge treatments for prostate cancer ?

[Darryl Partner]

watch these: youtube.com/playlist?list=P...

[sgrama]

My husband used the VA and most definitely didn't get any cutting edge treatments from them.

[traxcavator]

VA is generally a "child" of whatever civilian teaching hospital is closest. The doctors I've met have been interns/residents from the civilian hospital. Whatever the 'wisdom' or 'Harmumph, standard of care' is at the civilian hospital is what you get. If the associated civilian hospital is advanced that's what you'll get.

That being said, I find the non-doctors I've dealt with at VA to have a good attitude, and be somewhat less rigid than at civilian hospitals and offices.

I'm not stuck in any system, and will go anywhere or pay whatever it may take to get what's best for me. I've communicated with people all over the US and beyond. There are people whom I consider to be on my side, and others who can't even slightly think outside their little box.

As a generalization, what I find is that the MOs are the stodgiest of the bunch. Urologists, generalists and others are much more open minded.

John

[tayninhtom in reply to traxcavator]

My experience is similar. They tend to be five years behind the learning curve. However the VA is a wonderful advantage. I get my Erleada from them to avoid the high co-pay. They are great to have as a back up.

[MateoBeach]

I had two PSMA PET scans at the Greater LA VA for free before Pylarify was FDA approved. And I see the VA is enrolling a progressive BAT trial for HSPC veterans. Very progressive. I will have to check into getting my expensive Orgovyx and Nubeqa through the VA. 🤔

[reconjj in reply to MateoBeach]

Hey Mateo , do you know what VAs are engaging in BAT ? Someone here had a list of what VAs do BAT ? Thanks , SemperFi .JJ

[MateoBeach in reply to reconjj]

here is the VA-BAT trial. First they check for mutations to ATM, CDK12 or CHEK2. These were markers for the best BAT responders. List of V.A. sites and contacts included.

clinicaltrials.gov/ct2/show...

Smurtaw recently posted a list of all recent and current BAT trials.

[lokibear0803 in reply to MateoBeach]

Could you clarify for me — you’ve mentioned HSPC vets, but this trial NCT05011383 is for castrate-resistant. Sorry, I must be misunderstanding something.

[MateoBeach in reply to lokibear0803]

you are correct LokiB, my mistake. The VA-BAT is for mCRPC pre screening for mutations favorable for better BAT outcomes.

clinicaltrials.gov/ct2/show...

[RJAMSG]

Like most who have commented here, I would not say cutting edge (no surgical pun intended), but those that are working with nearby Universities tend to be better equipped/funded and have more knowledgeable staff. It depends greatly on where you get treated. The VA Surgeon had limited experience with robotic removal so I went with the UF surgeon that had done 5K surgeries at the time with mostly good feedback.

[reconjj in reply to RJAMSG]

Hello , my MO, at Hines V.A. Maywood Il. DR. Elizabeth Henry , wears a white smock with the Loyola University logo. Loyola is good I hear . Loyola is actually across the street . I also have a MO at University of Chicago , Dr. Smulewitz. Dr. S scripted me with 250mg of Abi , & 5mg of pred on a low fat meal when I was first Dxd Dec 9,2021. I brought this script to VA and Dr. Henry agreed to Dr. S, as she wanted 1000mg of Zytiga . Going forward I will have to choose 1 or the other as far as treatments as they might not agree on what protocol to follow. If I choose U of C I will enter the community care protocol where all meds scripted from U of C are sent to VA to get filled at no cost to me . So far I have not come to that crossroad . At Hines V.A. they treat and care for us like a 5 star hotel . Wishing All a Happy Veterans Day , SemperFi , JJ

[RJAMSG]

10-4 sounds good and you have solid options , Thanks Rob

[lokibear0803]

I’m not sure what we mean by “cutting edge” but the VA I’m using (Denver) has provided both abiraterone and relugolix for me w/o problem.

I received the ABI before it was approved for chemo-naive, back in 2016 — and I didn’t even have mets on conventional scans. So I thought that was a bit outside the box.

There was some question at first around cost for the relugolix, i.e. that they might steer me instead to lupron — but again, no problem, it was approved within days.

[Okay4now]

I go to the VA in Nashville, TN, which is a block away from Vanderbilt University Medical Center. I was going to the GU clinic for psa tests every 3 months, and saw a different resident every visit. I complained to my PCP that I needed continuity, and asked for an outside referral. I have seen urologists at Vanderbilt, and unfortunately they are just not dependable. (The google score of Vanderbilt Urology is 2 stars). They dropped the ball on the darolutamide I was promised, but a Vanderbilt specialty pharmacist saved the day by convincing the VA pharmacy to fill my prescription. So between the two hospitals, I get pretty good treatment, but I have to "ride herd."