Hello Loulou
I had a rising psa and an urologist following this in France. I had an MRI in France that found a tumour (PIRADS of 5) but the following biopsy missed the cancer - so the urologist sent me home saying there was no cancer. However the PSA kept rising and I had a second MRI a year later ... I was meant to have a second biopsy but somehow this was lost in paperwork .. so I payed for a PSMA-PET scan in Geneva. This showed the metastatic cancer - however although it was in my pelvic bone, spine etc there was no lymph node involvement.
I went to the Gustav Rossy hospital in Paris - and the suggested treatment was radiation treatment plus hormone treatment. Personally I do not fell confident with radiation treatment since it can damage things that should not be damaged (this is my opinion). I also had prostate cancer in my prostate - so I wanted this removed (since it is the source of the cancer) but I wanted to use these cancer cells to train my immune system to attack the cancer cells - hence the ECT + immunotherapy. I am not sure if it had any effect on my immune system - but maybe it did (who knows). I had a biopsy during the ECT that only showed up in a 700 micron area of a 15 mm core as Glesson 4+4 (4 cores taken) My PSA dropped very quickly but then started to rise again... so I had another PET scan in Geneva. This showed that the prostate had been successfully treated but not the bone metastasis.
I asked for advice from the German clinic - they suggested more immunotherapy or 177Lu treatment. Gustav Rossy in Paris said I could join their trial in Paris but I need to take hormone medication for 4 months - and then I would have a 50:50 chance of being treated with 177Lu - or of being part of the untreated group. This I did not find attractive - so I started a search for 177Lu treatment where I could have it before I was castration resistant, etc. And with the help of the immunotherapy clinic I found somewhere willing to treat me... and here I am about a year onwards from the last 177Lu treatment. I have now found a French oncologist to follow me within the french health system since the medication is so expensive; she sees me every 3 months.
In France and Switzerland: they give you a CD of the scan directly after the scan : MRI and PET scan : that I sent to the German (and other) clinics when i was seeking advice.
i am not sure of my status at present - certainly deep remission but whether 'cured' is too early to say. The 177Lu people say that they have ~ 3% cure rate (i.e. psa of 0 after 10 years ).
This activated PSMA treatments was initially performed with Actinium (an alpha emitter) that used to wipe out the saliva glands - so this was only used as the last chance (although it was impressive in its efficacy). Thus there was this worry about 177Lu (a beta emitter) : however for some reason (I have my theories on this) the saliva glands appear to survive. There are now trials with using 177Lu-PSMA at an early stage [Maybe the FDA has approved this treatment at an early stage in the US] so I do not think your oncologist is completely correct.
Good luck with your search for treatment - everyone is different so it is not clear the response of your partner would follow the same path as mine - I think it is great that this forum exists where people can talk. Please keep us informed.
Crispin
Edited by member 29 May 2026 at 07:43
| Reason: changed oncologist to urologist at start of post