Anyone received salvage lymph node removal for BCR after prostatectomy

Posted by rad62 @rad62, Apr 15, 2023

After experiencing biochemical recurrence after robotic prostatectomy (4 years ago) current PSA 0.25 my social health care was scheduling me for 25 sessions RT with additional 3 sbrt to suspected infection in common illiac lymph node which showed up on pet psma scan 8 months ago, I decided to do another pet psma scan in case the situation had changed and my plan had to be updated. I have to do the scan in a private clinic at a cost of 3000€ as insurance doesn't cover me but considered it worth the cost to get updated scan for treatment on social health care. The scan showed an increase in SUV max from previous scan SUV (1.9) increasing to (2.5) The scan was done in the same private clinic, one of the best in Spain.
I have now been presented with the possibility of a clinical trial, radiotherapy+ 6 months adt and additional drug apalutamide which shows potential, but incredibly the urologist is also suggesting I am a good candidate for surgery,removal of the infected lymph node and all other lymph nodes that are accessible to him. There is no guarantee that it will cure me but he says it can significantly delay the radiotherapy and hormone treatment. So my situation is now very different from having treatment in social care I can now enter a trial in one of the best clinics in Spain all costs of treatment follow up pet psma scans and closely monitored included, or I can opt for the surgery and if I relapse still enter the clinical trial for the RT ant adt with apalutamide.
If anyone out there has received surgery on lymph nodes for biochemical recurrence after prostatectomy with or without pet psma verification could you please share your experiences and any problems associated with the procedure. I believe some of the more difficult lymph nodes are more tricky to remove.
Thank you everyone for your input.

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hbp | @hbp | Apr 15, 2023

This sounds like the Jansen clinical trial that I am on involving the drug Erleada. If the clinical trial promises you that you are getting Erleada and not a procebo then it may be a good opportunity for you. Your doctor should be able to give you the name of the clinical trial and you could google that to see statistically how the participants are doing. I found that the side effects of Erleada were manageable. Good luck.

rad62 | @rad62 | Apr 15, 2023

Hi, yes it is the Jansen clinical trial, the urologist says I would have a 66% chance of receiving the trial drug.
I am still undecided if I should opt for the surgery to remove the lymph nodes over the trial, a difficult decision to make, I can't find so much information on the success of lymph node dissection for BCR after RP.
The bonus is if I opt for surgery and relapse I can still enter the trial.
The Urologist tells me the trial so far is very promising and that's why more people are receiving the drug
Thanks for your reply and good luck in the trial

hbp | @hbp | Apr 15, 2023

That is a 33% chance of the procebo and the procebo plus ADT would not be good enough for me. The Erleada drug has some side effects that ADT does not have and one is an increase of blood pressure. I had this side effect. My cardiologist increases my blood pressure meds and I was reassured that I got the Erleada and not the procebo. If you are in the clinical trial you have the right to quit it at anytime and proceed with other treatment. The clinical trial is a blind trial and even your doctor will not be advised of which drug you are on

rad62 | @rad62 | Apr 15, 2023

When I asked the doctor if I would know if I am on the drug he said yes ,there is no placebo involved. Here is a link to the trial , maybe it is not the same one. https://clinicaltrials.gov/ct2/show/NCT04557059

hbp | @hbp | Apr 16, 2023

I was on a Jansen Erleada clinical trial but not the trial that you have been offered. I took Erleada and ADT for 6 months then RP then 6 more months of ADT and Erleada. Then monitor and tested every 3 months which is the present treatment. I have Gleason 9, advanced, aggressive, CR, stage 3C. So I have experience with Erleada and it is a good experience, but not experience with your proposed clinical trial.

hbp | @hbp | Apr 16, 2023

Rad62 PS My surgeon wanted me to go on the Erleada , ADT clinical trial for 6 months before surgery because he told me doing so would increase my chances of cutting out all of the cancer in surgery or prolonging the period before the cancer would spread. You might discuss this theory with your medical team. I do not know if the clinical trial procedure helped me or not. I have gotten treatment at UCLA and my surgeon is an experienced professor at the medical school.

rad62 | @rad62 | Apr 17, 2023

Thanks @bhp,
I have been doing a lot of research on my situation, from what I can gather radiotherapy with hormone treatment is still the standard of care for bcr in lymph nodes with pet/psma verification. There isn't a lot of studies on the salvage node dissection and seems more trials are needed to ascertain the merits of the procedure over RT with ADT, so with that in mind I'm leaning towards entering the primordium trial.
stay well