Best prostate cancer oncologist in Europe?

[Aliel]

Hello. I've been a member of this forum for a while but I mostly just read.

My father has been diagnosed with prostate cancer 7 years ago and he had a prostatectomy right away and salvage radiation therapy two years later.

Right now his PSA has been increasing for about a year and it is now 0.11. We are at a point that we need a very good oncologist to develop a strategy for further treatments that has knowledge about the latest clinical trials as well.

Up to now he has been followed by his surgeon and radiotherapist in Germany, however they both did their job and we now must find an onclogist.

If anyone has a recomandation please let me know.

Thank you.

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History

23/07/2015 - PSA test - 33.78 ng/ml

24/07/2015 - Bonescan & MRI (results attached) 

31/07/2015 - Biopsy (Gleason 4+4, T3a)

1/08/2015 - Bicalutamide 150 mg therapy started

22/09/2015 - DaVinci Surgery at Martini Clinic at UKE

25/09/2015 - Pathology report released and stopped Bicalutamide therapy (1 positive margin - Gleason 4+3 (tertiary 5) - T3a.

21/12/2015 - First PSA after surgery - 0.01 ng/ml

22/03/2016 - Second PSA after surgery - 0.01 ng/ml

22/06/2016 - Third PSA after surgery - 0.02 ng/ml

22/09/2016 - Fourth PSA after surgery - 0.04 ng/ml

22/12/2016 - Fifth PSA after surgery - 0.05 ng/ml

22/03/2017 - Sixth PSA after surgery - 0.09 ng/ml

22/06/2017 - Seventh PSA after surgery - 0.15 ng/ml

23/08/2017 - Eighth PSA after surgery - 0.24 ng/ml

24/08/2017 - Bicalutamide 150 mg therapy started

12/09/2017 - PSA test - 0.075 ng/ml

14/09/2017 - PSMA PET/CT at UKE (nothing showed up)

19/09/2017 - Consultation at Martini Clinic

29/09/2017 - Radiation Therapy started (prostate bed only)

20/11/2017 - Radiation Therapy finished (report attached)

22/01/2018 - First PSA after radiotherapy - 0.01 ng/ml

28/02/2018 - Bicalutamide therapy stopped

23/04/2018 - Second PSA after radiotherapy - 0.01 ng/ml

23/07/2018 - Third PSA after radiotherapy - 0.01 ng/ml

24/10/2018 - Fourth PSA after radiotherapy - 0.01 ng/ml

25/01/2019 - Fifth PSA after radiotherapy - 0.02 ng/ml,

02/05/2019 - Sixth PSA after radiotherapy - 0.01 ng/ml

09/08/2019 - Seventh PSA after radiotherapy - 0.01 ng/ml

14/11/2019 - Eighth PSA after radiotherapy - 0.02 ng/ml

05/03/2020 - Ninth PSA after radiotherapy - 0.01 ng/ml

18/06/2020 - Tenth PSA after radiotherapy - 0.01 ng/ml

06/10/2020 - Eleventh PSA after radiotherapy - 0.02 ng/ml

27/01/2021 - Twelfth PSA after radiotherapy - 0.013 ng/ml 

23/06/2021 - Thirteenth PSA after radiotherapy - 0.04 ng/ml

18/11/2021 - Fourteenth PSA after radiotherapy - 0.04 ng/ml

18/03/2022 - Fifteenth PSA after radiotherapy - 0.06 ng/ml

25/07/2022 - Sixteenth PSA after radiotherapy - 0.11 ng/ml

[Tall_Allen]

Karim Fizazi at Gustave Roussy in Paris.

[Aliel in reply to Tall_Allen]

Thank you Tall Allen. I will get in touch with him.

[Claud68 in reply to Aliel]

He is very nice too.

[Brysonal]

I went private with Timo Joensuu at the Docrates Hospital in Helsinki in Finland.

[Aliel in reply to Brysonal]

Thank you Brysonal. I will look him up.

[Brysonal in reply to Aliel]

Good luck and best wishes

[GP24]

A very good oncologist is Gunhild von Amsberg in Hamburg.

martini-klinik.de/die-marti...

[Aliel in reply to GP24]

Honestly I’ve been extremely disappointed with Martini Klinik however I see this oncologist started there after my father has the radiotherapy. I will ask my international patient advisor at UKE to get an opinion from her. Thank you.

[GP24]

Gunhild von Amsberg presents at various conferences and has an excellent knowledge of oncology.

However, at a PSA value of 0.11 without ADT your father needs no systemic therapy yet. He can savely wait until the PSA value gets above 2.0 or 5.0 ng/ml. An oncologist should say, we have time, no need to start now.

[Aliel in reply to GP24]

Yeah he is still early for systemic therapy, however I want create a relationship with an oncologist first before that day comes. I am also thinking that when the PSA goes above 0.5 he could properly get a PSMA pet scan and if something shows up it could be target radiated buy pushing the systemic treatment even further.

[GP24 in reply to Aliel]

I had to wait until the PSA value rose to 3.0 ng/ml until the PSMA PET/CT showed mets and local recurrences. Yes, you can target mets, but often new ones appear after a year or so. Therefore I recommend to combine targeting mets with radiation and (intermittent) ADT.

An oncologist will usually not recommend targeted radiation, just systemic therapy.

[NickJoy in reply to GP24]

This is the approach they take at Docrates referred to by Brysonal above. My husband goes there too and we find them very good although we see a different oncologist to B.

[GreenStreet]

If I have read this correctly he has only had prostate bed radiation like me following RP? It is possible that the cancer is in the pelvic lymph nodes. I would ask his radiologist whether his physiology is suitable for whole pelvic radiotherapy. If the answer is yes I would consider paying for a combidex nano scan at the Radboud centre at Nymegen (contact Professor Barentsz or Dr Zamecnik). This scan which works well for lymph nodes (but not other places) picked up lymph nodes for me at a PSA of 0.11. I had a PSMA at the same time/same place which unsurprisingly did not pick anything else up. Unfortunately I was not suited for whole pelvic lymph node radiotherapy due to bowel toxicity issues but I have subsequently had targeted CyberKnife treatment plus bicalutamide to address the “offending” lymph node. My thinking is that if he is “lucky” enough to only have lymph node involvement and a physiology that permits whole lymph node radiotherapy he could be cured particularly if he adds 18 months/24 months ADT to the radiotherapy. A combidex scan could pick something up at a lower PSA level before further spread. The downside is you have to pay for it and it is only available At Nymegen so I understand. I had RP at a similar time back in 2015. Good luck

[Aliel in reply to GreenStreet]

Thank you GreenStreet. You are correct. He only had the prostate bed radiated as from what I see radiologists in Europe are very conservative when it comes to total radiation exposure. I will contact Professor Barentsz and Dr Zamecnik. If you don't mind me asking, who is your oncologist that is developing the strategies? Thank you.

[GreenStreet]

My oncologist in the U.K. did not recommend the scan in the Netherlands I learned about the facility from a post from Tall Allen. When I questioned my oncologist in the Royal Marsden in the U.K. they did say that they were only aware of one other patient who had gone to the Netherlands for the scan and when I asked they said oh he found something in the lymph nodes! So before I went to the Netherlands I did establish that the Royal Marsden would act on any result. Unfortunately they had a very theoretical conversation with me and said that in principle they would be able to treat my lymph nodes but they did not tell me before I went for the scan that my physiology was unsuited for whole pelvic lymph node treatment which they should have known given they took imaging for my prostate bed which is why I have advised you to ask the question beforehand. Barentsz and Zamecnik will be helpful unofficially about where to go for future treatment but they only do the imaging with expert interpretation. The issue I had was that the RMH could not see the node even when pointed out by the Netherlands. I had a PSMA in the U.K. when my PSA was just above 0.2 which faintly identified exactly the same area as the Netherlands picked up at 0.1. Indeed I ask myself the question whether it would have been picked up had they not been looking at that area in detail because of the prior Netherlands scan. So I would not recommend a particular oncologist but even when you find a good one imo you should take an active role in the treatment. My oncologist did not recommend the Netherlands scan I think partially because they only think in NHS tramlines.