Next step..

[rfgh20]

Gleason 9, s/practice RP. PSA UP to 0.2 8 months later. PSMA showed 4 hot spots all in pelvis. Started on zytiga and lupron same time as radiation started. PSA has remained < 0.04 for 17 months now. Considering the aggressive nature of my cancer, should I insist on a scan even when PSA <0.04 or wait till PSA bumps? What treatment would be best if PSA goes up or scan shows mets? Two oncologist have recommended 2 different treatments. Thank you.

[Tall_Allen]

"all in pelvis" - in bone, lymph nodes, or both?

[rfgh20 in reply to Tall_Allen]

two in prostate bed. one each lymph node on right and left pelvis. no bone . Thank you for your effort. I was about ready to go see Kwon till I read what your opinion was.

[Tall_Allen in reply to rfgh20]

I suggest you talk to a radiation oncologist who could treat all your pelvic LNs + intensive hormone treatment.

[rfgh20 in reply to Tall_Allen]

I had radiation. 37 treatments. I'm completing 2 years of Lupron and Zytiga in 5 months. Wonder what next for PSA increase or no increase. I feel like I should be scanned at least end of the 2 years. I'm afraid to stop ADT but that's the plan

[Tall_Allen in reply to rfgh20]

Your feelings are based on emotion, not science. Imaging will tell you nothing. The data are clear about this. Hopefully, you may be cured.

[rfgh20 in reply to Tall_Allen]

ok. thanks for your opinion.

[Mikes21 in reply to rfgh20]

I heard Kwon won’t see you until your psa is 1.4 and higher

[Karmaji]

Opinions differ...My onco with PSA<0.02.. GL 8

Goes for PSMA ..why not..

Since 2019...RT oligo 2 spots pelvis all radiated

Nothing on bone scan...but Pet scan showed

Luperon 3 years...end March 2022

Testerone around 50...

I am 83...

[Wife32]

It’s excellent that your psa is still undetectable. I do have some first hand experience to share however. If your high gleason score cancer is a low producing psa type, it is imperative to scan periodically. My husband also has g9 disease which was diagnosed 6 years ago, with low psa. He has had a few metastatic nodes and bone lesions all within his pelvis only.

Multiple biopsies confirmed adenocarcinoma, NOT neuroendocrine throughout this journey. He hs seen multiple doctors including ones at Cleveland Clinic, MD Anderson, and Mayo since there were multiple differing opinions. We ended up scanning with non detectable psa due to his high grade disease and did find a small met in the pelvis one time, which was treated successfully with sbrt. We continue to scan even with a non detectable psa due to that. As a matter of fact, we just returned from Mayo last night with an excellent report. It gives us peace of mind knowing that psa is not always a good predictor of his cancer activity.

I sincerely wish you the very best of luck. It can be confusing when your MOs have differing opinions, but it’s good to seek out professional, well qualified opinions from doctors that see your whole medical record. With these high Gleason score cancers, we need to be extra diligent. On the bright side, my husband is doing great 6 years in, still works full time, and we are all planning a trip to Ireland with our kids in the Fall. We are thankful!

[rfgh20 in reply to Wife32]

Thank you! It's amazing the diversity of this cancer in prognosis and treatment opinions. I appreciate yours.

[j-o-h-n in reply to Wife32]

Remember, drive on the left........especially when leaving the pubs......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/07/2023 11:38 AM EST

[Wife32 in reply to j-o-h-n]

😂😂😂

[Cooolone]

It all depends... My MO, and in "MY" case as I've been a very low PSA and PSMA producer, does not rely upon PSA "only" as a diagnostic. I have had additional imaging, from bone scans, to MRI, CT and PSMA scans, all depending of course... Again, in "MY" case, that's what's happening. PSA is only a door, one door!

Based upon your post and limited information provided, you seem to have responded well to your therapy and have been undetectable for almost 1.5yrs... so in my limited opinion, concerns are unfounded. You should be enjoying your success and not wallowing in worry about "What's Next" until you need to!

Good Luck and Best Regards