Am i catastrophizing over my results

[Walliam]

Hi. I’m a little confused over my situation.After Cyberknife treatment and two years on ADT with a constant PSA of 0.02 post treatment .My PSA started to rise and at 4.1 approximately I had a PSMA scan my second .i also had one 3 years previous to that and both were clear . My MO has me back on ADT and is about to add apalutamide daily on top of that… So my cancer can’t be seen on PSMA scan with a high PSA score Does my cancer not express protein ? do I need a nano pet scan to find it ?.how do I know my tumours not growing.. My first PSA result after a month on ADT was 0.9 .Should I get a scan now or am I been over treated or just overthinking this Thanks

[Tall_Allen]

Did you have an mpMRI?

[Walliam in reply to Tall_Allen]

No .T.A I’ve had a prostate MRI for targeted biopsy I don’t think that’s an mp MRI and PET after my initial treatment had ended ,which was clear also —and the PSMA s and also told I have micro met disease But where is it ?? Thanks again

[Tall_Allen in reply to Walliam]

mpMRI may be better at finding it in the prostate.

practicalradonc.org/article...

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

[Walliam in reply to Tall_Allen]

Would it be in the prostate after Cyberknife,? I would have thought the lymphs myself but I’ll look at mpMRI so does anyone know where I can get this scan done in Europe , Thanks

[NanoMRI in reply to Walliam]

Scans in Europe? I traveled from the US to London in 2015 for mpMRI with Professor Mark Emberton.

In late 2017, after RP and salvage RT failed to get all the cancer I consulted with Professor Padhani, also in London - phoenixhospitalgroup.com/ou...

He referred me to the Ferrotran nanoparticle MRI - which I had in January 2018. ferrotran.com/publications-...

At usPSA 0.10 the nanoMRI identified suspicious lymph nodes - that led to salvage extended pelvic lymph node surgery - done in Belgium. Although several in this group seem to speak agains ePLND I am holding very low stable 0.03X, six yers since ePLND, no ADT, no chemo.

Hope this helps. All the best!

[Tommyj2 in reply to NanoMRI]

Where in the world do you folks get the money to hop around the globe for all these treatments?…….more important….has it really helped…..would you do it again?

[NanoMRI in reply to Tommyj2]

Without question Yes I would do it again. As for the money, I was raised to save for rainy days, and well, .... Also, European out-of-pocket private patient medical costs are very reasonable, well under the cost of say a Corvette, Bronco or a Tesla. The two imaging methods I went to Netherlands for in January 2018 were not available to me in US at that time. Today, the Ga68 PSMA is, but the 'even better' nanoMRI is still not. The salvage ePLND I went to Belgium for removed considerable tumor burden, despite my usPSA 'being just' 0.10. I could not find a center in US to do the ePLND - including the surgeon who did my RP. All US centers of excellence and well know docs I consulted with recommended ADT/chemo over the ePLND. Post the ePLND, done six yeas ago, nadir was <0.010, the value I rely on as best indicator, and held for two years. As shared, today, holding very low stable 0.03X range, no ADT/chemo. Last years Ga68 and Pylarify done in Houston, Texas were clear. IMO I am most grateful I got out ahead of and stay ahead of standard US clinical practices.

[Mrtroxely in reply to Tommyj2]

Hah.Good money to be made from illness.

Not so much the cures.....

[Tall_Allen in reply to Walliam]

It's rare, but it could be still in the prostate.mpMRIs are available everywhere.

[Walliam in reply to Tall_Allen]

Thank you T.A most appreciated

[maley2711 in reply to Tall_Allen]

Thanks for those studies!! How is RT nadir determined when the treatment was RT + ADT? Only after x months after last ADT ?

[Tall_Allen in reply to maley2711]

Nadir is always the lowest PSA.

[maley2711 in reply to Tall_Allen]

OK, thanks. Just seems the ADT/low T could mask the "true" result. especially if 1+ year ADT + RT

[Tall_Allen in reply to maley2711]

If undetectable is the nadir, then that is the true result.

[maley2711 in reply to Tall_Allen]

OK...but strange (to me only I suppose).

[TJGuy]

PSMA is only one type of scan that can find PC. Choline, or Axumin scans will find PC as well especially if you do not show PSMA.

I've had all three, and was in a clinical trial comparing Choline with PSMA.

Get one of these before you go back on ADT as ADT will suppress your PSA and make finding your reoccurrence difficult or impossible.

There is also a doctor and hospital in Germany that has a scan that is reportedly much better than PSMA. If you're interested I can give you information on that.

[NanoMRI in reply to TJGuy]

Are you speaking of Ferrotran nanoMRI? Had mine in January 2016 at usPSA 0.10 at Radoud UMC Nijmegen. The nano MRI identified suspicious lymph nodes, confirmed by ePLND, cancer at the paraaortic lymph nodes. The concurrently done Ga68 PSMA did not identify any suspicious sites. I was not on ADT. I had second Ga68 and Pylairify last year for comparison, at 0.030. Both were clear, as expected. Now considering choline, axmin and latest PSMA flavor just to be sure.

[Walliam in reply to TJGuy]

That information would be fantastic thank you TJ . I’m only a few hours flight from Germany

[TJGuy in reply to Walliam]

This is the German Dr and University involved in Zirconium 89 research.

Zirconium 89 is the drug used to identity your PC by attaching to PSMA.

This drug has had great results in finding PC cancer not found on regular PSMA scans.

I believe it's a three scan process over three days

Dr Ezziddin

A contact in his office Maike Lahm

In German

Klinik fur Nuklearmedizin

Universitatsklinikum des Saarlandes

Kirrberger Str. / Gebaude 50

66421 Homburg / Saar

Deutschland

T. [phone]

Fax [phone]

[e-mail]

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[Walliam in reply to TJGuy]

Thanks TJ I’ll definitely look into that . Thank you so much for the info.

[bandgeek]

Overthinking. PSA is only an indicator. I'm castrate resistant and metastatic, and with a rising PSA of 26, show no progressive (new) disease. On lupron, now enzaludamide, and recently started a trial. If you don't have confidence in your medical oncologist get a second opinion

[Walliam in reply to bandgeek]

Thank you . I just feel there going through the standard procedure with ADT and apalutamide and hope for the best .I want to follow this and try to beat it an come off all the medication