Radiology second opinion

[Cali3]

Husband recently diagnosed with stage4 PCa. we would like you get a second opinion on his PSMA PET scan from UCSF, Mayo. How do we request it?

[JohnInTheMiddle]

Almost 2 years ago I had a similar diagnosis - high volume high risk and some mets to lymph nodes in the hip area and worse metastasis to vertebrae with immediate risk to spinal cord. Gleason 9.

1. Why would you want a second opinion?

2. Do you have a medical oncologist?

3. Has ADT been initiated?

It would seem to me that time is of the essence now.

[Cali3 in reply to JohnInTheMiddle]

Yes we have an MO. ADT starts later this week and chemo a few weeks from now. .

[Tall_Allen]

Which PSMA test was it (pylarify, Gallium68PSMA, rhPSMA7.3)?

[Cali3 in reply to Tall_Allen]

It was Pylarify

[Tall_Allen in reply to Cali3]

I suggest Andrei Iagaru at Stanford. Just call his office to set it up.

[Cali3 in reply to Tall_Allen]

Thanks Tall Allen for your response. The PSMA PET scan report only calls out there is extensive foci with pyl uptake in the pelvic bones.

Also states that there is focal pyL uptake in the prostate bed.

No focal uptake in lymph nodes.

However, it doesn’t state the SUV max values for any of it which I have seen on many other reports posted on this forum. How important is it for PSMA pet scan report to list SUV max values?

[Tall_Allen in reply to Cali3]

The radiologist looked at that.

[Cali3 in reply to Tall_Allen]

Yes this was written and signed off by the radiologist.

[7hcpgolfer]

Peter Carroll, MD Heads up the Prostate Cancer Center at UCSF. I consulted with him during my prostate cancer diagnosis/ battle. Excellent! Also, Dr. Rohit Bose, MD was my Medical Oncologist, also at UCSF. 415-476-4616. I live in the San Francisco, Bay Area. Three of my friends are Urologists. They highly recommended Peter Carroll, MD. All the best!

[JrTOO]

PSMA Pet scan is usually self-explanatory. It is the follow-up treatment necessary to treat mets that is tricky. Orgovyx eliminated my two tiny inguinal lymph mets found with Pylarify, found with second PSMA Pet Illuccix, but failed to keep PSA from rising ! Started Nubeqa and Firmagon. PSA indetectable from Nubeqa, and Firmagon dropped testosterone to low castrate level. Every patient responds differently. Doctors' preferred standards of care is problematic for me because I want targeted treatment, not radiation or chemo, due to side effects. ADT also has side effects which to me are less dangerous than radiation/chemo side effects. If ADT fails, or alternate ADT or other targeted therapies fail, I will re-examine radiation/chemo out New treatments are in the works.

[JrTOO]

[of necessity.] My laptop keyboard too small for my large hands!

[dhccpa in reply to JrTOO]

You say Nubeqa reduced PSA, and Firmagan dropped T. Don't both those drugs work toward both those goals? Just clarifying.

[JrTOO in reply to dhccpa]

True, BUT.... They do not have same MOA(mechanism of action). Androgen receptor inhibitor vs GnRH receptor antagonist. Best if you and others study these two phrases in depth.

I took Firmagon by itself in 2021. It dropped my PSA to indetectable. But urologist did not test testosterone. Urologist terminated Firmagon in order to give PSA time to rise before first PSMA-PET(Pylarify) to have PSA to bind to(10/31/23).

My new oncologist was first doctor to test testosterone since 2015 prostatectomy. Nubeqa, started first, dropped PSA to indetectable. Then Firmagon started 2 weeks later, and PSA was already indetectable. New oncologist ALSO tested testosterone, which dropped to castrate level. Was it Nubeqa MOA, or Firmagon MOA, or BOTH?

First course of Firmagon 2021 effectively dropped PSA to indetectable. Orgovyx started after 2022 PSMA-PET Pylarify never dropped PSA below .1, and began doubling every 30 days. Stopped Orgovyx. Started Nubeqa. Firmagon added 2 weeks later.

HOWEVER--Orgovyx did eliminate 2 tiny inguinal lymph mets found 10/31/22 but second July 3, 2023 PSMA-PET Illuccix showed GONE!

I report my treatments and results. I don't presume to know everything a doctor, a good doctor, knows. But I encourage all of us to read scientific papers, and try to be on equal intellectual footing to our treating doctors to keep them on their toes.

[dhccpa in reply to JrTOO]

Thanks. I've been on Lupron only for five years. But Doc checks both PSA and T. And runs scans. Not sure why your old doc wouldn't check T. Yes, I understand about the different MOAs, at least superficially.

[caltexboy]

University of California, San Francisco Medical Center is listed as a Clinical Centers of Excellence.

Clinical Centers of Excellence

[pj1121]

yes get a second opinion. Just google UCSF second opinion. I was in the same situation. UCSF suggested a more complete radiotherapy, which my MO and ro would not have suggested. But agreed to after seeing the opinion of UCSF. $1000 but worth it

[tango65]

UCSF has a large experience reading PSMA PET/CTs. Your doctor should request the SUV values of the blood pool, the liver and of each one of the mets. The radiologists have this information and they could provide to your doctor and you.

[JrTOO]

Patients are entitled to second opinions. Ask your treating doctor to arrange it. Or, call medical center and request second opinion appointment.

If your doctor resists, find new doctor asap.