just joined seeking advice

[Vegeguy]

Diagnosed Gleason 4+3 Had RALP and doing ok. Do have ED issues but trying with meds. Pathology after surgery showed that Doctor removed everything except showed features such as PIN, cribriform and intraductal. So according to this reoccurrence is high but I don’t know. Seeing Doctor for follow up next week. Should I ask for PSMA pet scan or extra blood test? What more should I be asking? Undetectable ultra sensitive PSA now. Is my risk pretty high for reoccurrence? Also besides Mayo Clinic can anyone recommend a major center/Doctor in Midwest that is good with Prostate Cancer? Thanks for your time.

[Tall_Allen]

First PSA should be in 3 months (you have to clear out the PSA from the surgery). Ordinary PSA test is fine - there is no need to do anything (like a PET scan) unless PSA reaches 0.1. Begin penile rehab as soon as catheter comes out.

[BeHealthi in reply to Tall_Allen]

PET scan is more likely to be your expenses as I believe most Insurance companies will not paying for it if PSA has not reached 0.2.

[FMOH_N]

uPSA is a good indicator that can early detect BCR:

ncbi.nlm.nih.gov/pmc/articl...

prostatecancer.news/2016/08...

[FMOH_N]

I am also in the same situation. Had RALP 17 months ago with 4+3, 70% of pattern 4, Intraductal & cribriform, PNI is not investigated so unknown. prostate 35x40x50mm, tumor size 14x8mm (2 dimensional), no other adverse features. Had a discussion with MO after RALP, but no action or any additional treatment. He said wait and see for PSA rise before any additional treatment. Had new robotic lymph node dissection 4 months after RALP, where 9 lymph dissected, no cancer found (I insisted for lymph node removal due to adverse finding and upgrade of cancer, biopsy 3+4 to 4+3 after RALP). Is any node removed during RALP? I am also very interested to hear what your doctor recommends and decides for any additional treatment, please let me know

[NanoMRI]

You commented you are experiencing ED issues and your PSA is "undetectable". Correct to presume cath has been out for at least a good number of months?

What should you be asking? As you reference "undetectable" what PSA value are you relying on for this determination? I find great value in ultrasensitive testing and rely on <0.010 post RP as best indicator; I believe 'undetectable' is dangerously misleading. I would also be asking yourself and your docs at what PSA value will you be taking next actions. After twice waiting until 0.1 to take actions I learned to begin imaging with several methods and having liquid blood biopsy testing no later than 0.050. Hope this helps. All the best!

[Vegeguy in reply to NanoMRI]

What type of imaging do you recommend and can you please explain the liquid blood biopsy further? Thanks

[NanoMRI in reply to Vegeguy]

I have come to learn no single imaging method is best nor is it likely any method will show everything. Also, for earliest possible detection, which is my focus, multiple methods may be needed to find one that 'works'. PSMA is getting all the press but don't overlook the more established ones such as fluciclovine and Choline. As I share, almost seven years ago, I traveled to Europe for Ga68 PSMA PET CT (was not available in US at that time) and nanoMRI (unknown when latter will be available in US). While the Ga 68 was 'clear' the nanoMRI successfully identified multiple pelvic lymph nodes - confirmed cancerous by ePLND. That was at a uPSA of 0.13.

Just recently a Pylarify PSMA PET CT, done at 0.033, successfully identified a 2.3 cm metastatic liver met. Turns out not PC which we were looking out for - it is an unexpected melanoma met.

I have had two GUARDANT360 CDx liquid blood biopsies - a simple blood test. The first one was clear while the second, done concurrently with my recent Pylarify, identified the TP53 mutation; supportive of the liver lesion finding. FoundationOne is another brand - I have no experience with it. This might be helpful: cancer.gov/news-events/canc...

[Laguy01]

i would request a PSMA. That will show everything

[Vegeguy in reply to Laguy01]

But if PSA is zero PSMA pet scan will not show anything?

[Laguy01 in reply to Vegeguy]

I guess you are right. If PSA is zero then there should be no cancer but I had a PSA of 4.24 and had aggressive cancer that had spread to my Lymph node. I do not think PSA can totally be trusted with this type of cancer. I think a PSMA scan should show everything in a case with that type of cancer but then i am not a doctor.

[FMOH_N]

prostatecancer.news/search?...

[bdrakes]

Same club as you with Intraductal, PNI, Crib, Gleason 9 (higher risk) ED, Decipher .98, just a few months out from RALP (April 24). When did you have RALP? I've been holding PSA monthly at .05 . If you have Intraductal you're right the challenges seem to be greater for it to express itself more pronounced sooner. My docs/oncologists so far after six months are suggesting Radiation/Hormone Therapy which I'm truly considering so you will have some choices coming up soon. There are only a handful of folks with Intraductal on this blog and hopefully more like FMOH will call out their similar diagnosis so we can all share info. I'll send over the 5-6 others on this blog that have so far popped up. Many docs say they treat Intraductal (IDC) exactly the same as any PC but from what little I can find that's out there it truly is not the PC club you would choose among the roster. Key I'm continually encouraged to hear is that if we stay on it and attack early rather than later and stay in the game the advances in medicine may outpace our aggressive form of PC and we'll have solutions on the table in a matter of 2-5-7 years that we are not aware of currently that will get us many additional great years of living.