Treatment Confusion Follow-up/Reply to Tall Allen

[mangeycritter]

Original Post:

I have been following the posts here for months, thought I was pretty well informed, but posters like Tall Allen and others are way ahead of me. I am completely confused. Here's why:

Current age 78, excellent health otherwise

Prostatectomy Jan, 2012. Other than gland (3,4) 10% one side, 5% other, T2cNO, all negative.

Jan, 2016 PSA 0.2

Jan 2017 PSA 0.3

Apr-June 2017 salvage radiation

July 2017 PSA 0.46. RO wanted to start Lupron; I declined.

Mar 2018 consult at Johns Hopkins: Leading MO there said to wait before beginning ADT. He offered that they usually don't see mets until PSA of 20 (twenty) or so.

2019 Consult at MSK, where wife being treated for MBladderC by Dr. Jonathan Rosenberg, who referred me to doc on his staff. That MO said I did "the right thing" by refusing ADT at 0.46. Said that doubling time (10 months) is "low risk."

2019 PSA continues to rise, now 2.98. Having PSMA scan Monday, Sep 9 at MSK.

So 2 docs at 2 leading institutions don't seem to be in any hurry to begin ADT, which is at odds with the many posts here, where ADT begins at much lower PSA levels.

Also have read Johns Hopkins pubs estimating outcomes based on Gleason, post-surgery time to recurrence, and doubling time. If I read these correctly, 10 and 15 year favorable survival probability.

I would appreciate any thoughts from the crowd. Many thanks in advance.

Tall Allen asked that I start a new post with results of Scan:

Scan was Ga-68 PSMA at MSK

"Head/Face, Neck, Chest, Lungs, Pleura/Pericardium, Hepatobiliary, Spleen, Pancreas, Adrenal Glands, Kidneys/Ureters, Abdominopelvic nodes, Bowel/Peritoneum/Mesentery, Pelvic organs, Bones/Soft Tissue-------all "no abnormal uptake."

Thoracic nodes:PSMA avid subcarinal nodal measuring 1.8 x 1.1 cm, SUV 27.3 and PSMA avid left hilar node, 1.3 x 1.2 cm, SUV 21.3

Other findings: None

Impression: PSMA avid subcarinal and left hilar adenopathy consistent with metastases."

Once again I would appreciate the collective opinion of this well-informed site, and thank you.

[Tall_Allen]

The JH nomogram you looked at did not include men who already had metastases. Your stage is M1a. Did your MSK doctors recommend no ADT after seeing your scan results? It is certainly standard-of-care to begin ADT after metastases have been found.

[mangeycritter in reply to Tall_Allen]

Thanks TA. See Dr. Abida at MSK on 9-20

[mangeycritter in reply to mangeycritter]

Hello Tall Allen,

Sep 20, 2019 meeting: Doc at MSK recommends intermittent Lupron. Firmagon, then 3 month lupron. No other drugs. He said my disease is "very small." After reading here of so many horror stories about side effects, I'm really torn about starting adt. Will send PSMA scan dvd to Dr. Denmeade at JH for his opinion. Recognizing that you have already noted that adt is soc, I would appreciate your further comments. Thanks

[nextphase]

just wondering if you have had the axumin pet scan?

[mangeycritter in reply to nextphase]

Hi nextphase,

I had axumin scan in Jan '18 (PSA 0.74) & again in Jul '18 (PSA 1.42)---both negative.

In Sep '19 had Gallium PSMA pet scan at MSK--- all negative except 2 nodes in thorax.

PSA now 4.2. MSK onc wants to start lupron. I meet with him tomorrow, Nov 13, but will decline lupron. For the near, and hopefully indefinite, future I will be trying Vincent Trocano's protocol. Please see website pcspes.net. It is loaded with information. I'm always skeptical of this kind of stuff, but read the numerous testimonials as well as the UCSF study results. Hope this helps. Best of luck.

[StayingOptimistic in reply to mangeycritter]

Hi

How did it go with your MO at MSK ? I am also treated there. Thanks