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Hi !

From what Murcao has told in other thread the Netherlands only radiate 5 or less pelvic lymph  nodes and if more they don’t treat pelvic lymph nodes if I understand him correctly.

Best wishes - Ulf

The insurance as no problem with that ,the problem is the radiologist. 

Yes ,that's correct ,they radiate till 4 ,this radiologist said he will go till 5 ,but I told him that I want all pelvis radiated and boost to the positive ones ,he was not happy with that, than I said he would call me back after taking to the team ,when I made the scan they told me they were 5 nodes positive, but normally they only radiate 4 ,then the radiologist said he saw the scan and identity for sure 6 ,don't know what to think anymore, my first thought was because I pressed him to radiate all pelvis he came out with that of 6 so he puts himself out ,and advised to ask a second opinion. 

Hi !

Like I said. I’ve seen persons, like myself, on this forum having had Whole Pelvic Radiation Therapy (WPRT). In my case I had Hypofractionated IMRT in Finland.

20 fractions of 2.2 GY

20 fractions of 3 GY to affected lymph nodes

I’ve seen others describing other modalities of WPRT but no one having had the discussion of the amount of affected lymph nodes. I can totally understand that the more you have the more it can impact the outcome but NOT treating them is the same as there will be cancer left.

You should ask for second opinion at a centre of excellence in the Netherlands and also check up with your National health insurance company on the possibility of second opinion and perhaps also treatment in like France, Belgium, Germany, Spain and etc.

Best wishes - Ulf

I'm starting to get paranoid about the system, first they say I have 5 being four the max to radiate, palliative on my report ,then I go to the radiologist and he says he can do 5 but he must count them ,them imhe come with 6 ,1 above again ,did he really count 6 or he was told to step back ? I was already diagnosed not curable and then he came with the possibility of cure ,very strange, always 1 above. 

You must excuse me but I have a mind which tends to think outside the box which was useful in my job as an R&D scientist. This dilemma on how many lymph nodes is too many to treat with radiotherapy got me thinking about Prostatectomy with extensive lymph node dissection for medium to high risk patients. I have to declare that I know very little about this but from what I have read it would seem that 10 appears to be on the low side with an average of 12/14, but as many as 40 can be removed with the main problem being the risk of development of a lymphocoele the more that are removed. My question is why is it acceptable to remove so many during the Prostatectomy but not by radiotherapy. Maybe a question for the experts.

Maybe as to be about the levels of radiation on the same area of the body, but your question I'd very pertinent, they say our greatest problem without surgery is because whe still have a prostate whe must be on adt and hormone therapy for long time ,then why they refuse to remove the prostate, another situation, they also say radiation is so effective killing cancer cells as surgery to remove them ,ok so why radiate the prostate and all lymph nodes ,as in my case ,doesn't give any percentage of probable cure ,as I said before I tend to be a little paranoid and many problems about trusting the system, I get the idea that they don't really want to cure us ,a cured patient is no longer a generator of profit, for instance my report said ,by the urologist, 5 positive lymph nodes, one to many ,no cure ,then the radiologist said he can cure me radiating those 5 ,but I had acess to his report and in the same they he wrote only radiation of the prostate nothing else ,2 days later he came up with the news that he saw the scan and he saw 6 ,again one above he said ,again no cure possible, first they saw 5 ,one too many ,then when 5 was still doable another came up, sorry not doable again ,it may be true but it's suspicious because I had more lymph nodes suspicious and in the first hospital theu made a precise count so the oncologist decids the treatment. 

So tell me you had previous radiotherapy in Sweden, and then in Finland you did 20 days radiotherapy or 40 days ,sorry for my ignorance, I'm trying to learn ,but if you had radiotherapy before in Sweden was not a problem with too much level of toxicity?and about side effects? For what I daw in the hospital website my dossier they planned 2 weeks total 5 sessions of 7,25 gy per session for prostate and seminal vesicles, no idea what that means in terms of toxicity, maybe you can give me same ideas of what that means ,thanks .

Hi !

I had a HDR Brachytherapy mono therapy in Sweden beginning 2022 that failed (probably my cancer was bigger then diagnosed by MRI (initial was T1C)) and my new diagnos at the end of 2022 / beginning of 2023 was T3BN1M0

I had a dialog with an senior urologist about doing salvage prostatectomy and lymph node removal but he advice me not to because of the risks and also the probability of recurrence.

So the only thing Sweden had to offer was systemic therapy. I started Bicalutamide but it only worked for half a year.

In dialog with my wife and family I decided to look for treatment at Docrates in Finland in 2023

My restaged diagnos was T3BN1 with no distant mets and my PSMA Pet scans showed very high PSMA avid cancer so my treatment was started with 3 cycles of Lutetium-177  in the end of 2023 and after that treatment 75 % procent of my cancer in prostate and seminal vesicle was debulked and I had less than 20 % left in my affected lymph nodes (almost vanished radiation activity when doing SPECT Scan). Directly after the start of first cycle of Lutetium I started long term ADT (Firmagon).

After my 3 cycles of Lu-177 i started my 20 fractions of Hypofractionated VMAT RapidArc IMRT with WPRT; 20 x 2.8 GY to prostate and seminal vesicles, 20 x 2.2 GY to whole pelvic and then 2 x 3 GY to affected lymph nodes.

2 weeks after external beam I started long term Abiraterone. So adjuvant lon term treatment

3 months and 6 months after final radiation my PSA measured < 0.1

If I look at the total dosage in GY I’m way over what is recommended especially in the lymph nodes. But Lutetium-177 is a radioligand therapy and releases radiation in PSMA avid tumors and lessions. It has a very short wavelength so nearby tissue is not radiated at all so the recommendation is actually only calculated for external beam and standard boosts. But to have effect of Lutetium you need to have highly PSMA avid prostate cancer, with a high SUV Max because then it seeks up that cancer, attach to it and releases radiation with a half life of 6 - 7 days (it’s something in between HDR Brachytherapy and LDR Brachytherapy when if comes to half life and the modality of radiation)

I’m fortunate to have been able to pay for my treatment in Finland. For example Lutetium-177 is not used in early stages of prostate cancer like me. There are however studies and trials now going on and starting up with combinations of Lu-177 as early use and external beam, SBRT or with HDR Brachytherapy and then of course long term ADT

So, I have given myself the best chance of salvage treatment and time will tell. Docrates is on the frontend of radiation therapy and I know there are lots of people from Sweden, Denmark, Norway, UK and etc. that are doing it’s primary therapy at Docrates.

I actually know of a man from UK that had a failed HIFU, was re-diagnosed with metastatic cancer in nodes and went to Finland; did 3 cycles of Lutetium, 3 cycles of Docetaxel, did 20 fractions of Hypofractionated VMAT RapidArc with WPRT, SBRT to a his bone mets, started Firmagon after first cycle of Lu-177, finally had 2 fractions of HDR Brachytherapy and then added Apalutamide.

He’s now off hormone therapy after his 3 years of Firmagon, still on Apalutamide but the treatment he had was with ’curative intent for a advanced metastic prostate cancer with bone mets’He’s still < 0.1 after his was finished in 2021 

Agressive treatment but so far so good. 

Best wishes - Ulf

Hi !

Ok, so are you saying you will have one session / fraction each week for 5 weeks and each fraction is 7.5 GY? If so that’s SBRT / SABR you’re going to have and I think it’s at least equivalent of standard EBRT like 35 fractions of 70+ GY (2 GY / fraction) or like 20 Hypofractions of 60 GY (3 GY / fraction).

Actually I think the toxicity is equal between SBRT, conventional EBRT or Hypofractionated IMRT

Best wishes - Ulf