Suggested MDs for Second Opinions? BCR (recurrence) after primary surgery and adjuvant radiation and ADT w/Zytiga

[PGDuan]

Hi all, just a brief update and a polite ask for referrals on second opinions for my situation.

Here's the short story. I am bio-chemical recurrent (BCR) after surgery, radiation and ADT + Zytiga. Still feel great, no symptoms. No sign of tumors and nothing detectable on PSMA scans.

Seeking to get 1-2 qualified second opinions so I am well-informed on whether to go back on ADT+, wait to see how things develop, or try something else.

There is no standard of care for BCR after being undetectable from EBRT/ADT although there is ongoing research. My primary oncologist is suggesting 6 months intermittent ADT, or perhaps a forthcoming trial of Belzutifan / HIF-2.

I've been thinking about trying to get an opinion from Prostate Oncology Specialists (Dr Lam), MD Anderson, UCSF, etc. Maybe this is overkill, but I'd like to be sure that I have really thought this through, especially as I've now had to go through "you've got cancer" diagnosis 3x.

Thanks -

Here's the long story for this interested > PSA readings have gone from undetectable since January 2019 and start of ADT/Radiation to the following over last 6 months: <0.5, 0.15, 0.29, 0.16, 0.29, 0.35, 0.4, 0.47. I was dx at 52, GS 4+3, PSA 11 and had surgery w/neg margins, nodes, but was originally recurrent after surgery with PSA 4.0, so I then underwent EBRT and ADT with Zytiga for 18 months that drove PSA to undetectable. Now it's back.

I just have had 2 "trial" PSMA scans at Stanford using new isotopes (Ga68-PSMA-R2 and Ga68 NeoBomb). Both didn't show anything specific. Axumin scan was also negative on uptake.

[Magnus1964]

You might consider Casodex. It is an older ADT drug with fewer side effects.

[AlanMeyer]

Hello PGDuan,

All of the institutions you mentioned are leading research hospitals. There are great doctors in many places even including some in private practice, however I particularly like institutions where research is done and the doctors are generally required to keep abreast of the latest research. You can find other such institutions in the NCI list of "Designated Cancer Centers" ( cancer.gov/research/infrast... ). You may be able to see lists of staff with information about their experience and credentials, and comments by patients. You can also search for names in the National Library of Medicine Pubmed database ( pubmed.ncbi.nlm.nih.gov/ ) to see what the docs have published. That's a little tricky to use since, among other issues, I've seen scientific articles published with over 250 co-authors for one article. Hmmmm...

I notice you named institutions that are far apart from each other (UCSF in California and MD Anderson in Texas). If all else is equal, there may be some benefit to picking one near you so that, if you or they want to meet with you again for testing or discussion, it's easy for you to get there.

Best of luck.

Alan

[PGDuan in reply to AlanMeyer]

Thanks Alan. Good point about the benefits of proximity. I have been working with Stanford and UCSF since I’m in Norcal. We’ve probably all been there, thinking about how to make the “right” decision. I feel like I may have played my cards poorly at earlier stages of this disease, hence the efforts to get the best/latest opinions now as I enter another stage, Thanks much.

[London441 in reply to PGDuan]

You definitely want the best MO you can find, but I wouldn’t say you ‘played your cards poorly’. More like maybe you chose the wrong casino! It happens all the time.

It’s unfortunate we don’t usually go into this knowing the complexities of this disease and the importance of finding not only the best docs we can but the best specialist at each juncture. Your 4.0 PSA post op despite negative margins and a ‘clean’ pathology stands out. Not good.

However, you are still in a great position moving forward. Especially since maybe your eyes are open just a bit wider now. Great luck to you!

[keepinon]

I am following in your footsteps, although still undecteble, at least until my next PSA. I will be curious as to what options you will be given . I am also in N. CA.Safe travels.

[cesces]

Try to get someone from Dr. Kwon's group at Mayo to look at you.

Better to have too many 2nd opinions than too few.

[PGDuan in reply to cesces]

Thanks for the helpful suggestion. I recently watched a discussion of his on YouTube and found it very informative.

[patandemma]

consider ALSO, Tanya Dorff MD at City of Hope in Duart,California,just east of Los Angeles.She is doing some pretty cuting edge clinical (not lab rat) work with CAR-T

[PGDuan in reply to patandemma]

Cool - thank you! I’ll look into her work.

[PGDuan in reply to patandemma]

Had a very helpful meeting w/ Dr. Dorff. Thanks for the excellent suggestion.