My father is recurrent G9, discovered in May 2020 when his PSA rose to 0,24 (he has always had low PSA). Scan shower two small bone mets in iliac and pelvic bone. He started only radiation in June to prostate bed + mets. At this time I was worried if we should start with ADT or not. Beginning of July the PSA was 0,14 (still no meds) and since both me and my father was worried about not getting any systemic treatment he got a one time triple-dose of Firmagon the day after. The radiation treatment is ending next week, he is getting a new blood-test on Monday. My father is curtain PSA will be undetectable because of the Firmagon, is that so?
Not here is our dilemma: what should we do now? I got an online second opinion from Dana-Farber but the doctor misunderstood and wrote that my father’s recurrence was discovered on 2019 and had now been rising to 0,26.That doctor suggested 4-6 months of ADT. But since the doctor got the information wrong (I dont understand how, he got other things wrong too) my father is unsure if he can trust that opinion at all. I’ve send a message to Dana-Farber hoping they can fix the second opinion, because now it feels like I have only gotten my father more stressed out while burning some money in the microwave.
My father’s current doctor wants no more ADT going forward, to be able to test PSA post radiation and do PSMA-scan if possible. Also he talks about not becoming CR which is my father’s great worry too (he does not want to start ADT to soon).
My father listens to me and values my opinion, which makes me happy/anxious because I feel a little lost now.
Written by
TheTopBanana
To view profiles and participate in discussions please or .
Should I get a new second opinion? My sister feels that our great concern is not making our father too worried at this stage, because we don’t know what will happen going forward.
One more question: my father is very worried how long the mets have been present (as this might indicate aggressiveness of the cancer, beside Gleason score). Is there any way to know this?
Your father's doctor is giving you excellent advice...follow his advice.
How long mets were present is not that important......How long the mets were causing pain or discomfort is important. When mets are sticking superficially to bone, they do not cause pain meaning they are superficial and not penetrated deep inside.
Absolutely. All bone mets are not the same. The severity of bone mets primarily depend
on how far deep the cancer cells have penetrated inside the bone. If the bone mets are just sitting on the superficial layer (periosteum) of the bone and has not succeded to reach deeper , there is usually no pain. My bone mets were superficial and never gave me any pain or discomfort for 5 years and therefore I did not even know that I had Prostate cancer. Blood values have all been normal for those 5 years except for PSA which I was never informed about by doctor's office.
If you are so cancerned about those two useless mets ...Do bone specific Alk Phos every 2 to 3 weeks and bone scan every 3 to 4 months. Do not let people scare you too much.
Thank you! I will. What does it mean if PSA is undetectable or not? My father is uncertain is he should have continuous ADT so unsure how to interpret it.
It would seem your father's cancer is somewhat aggressive. If his PSA goes down he should stay on ADT drugs. It means the ADT drug is working, whether it's Firmagon or some other ADT drug.
His PSA is undetectable (which means >0,01 with this measurement, perhaps we should have another test that is more detail?) and his T has dropped from 23 nmol/L to 0,6 nmol/L.
Probably you wanted to write <0,01. Just a pedantic note.
No surprise here. You only have to wait, provided of course he didn't take any more Firmagon.
The question of whether ADT added to radiation increases overall survival has been studied, It has been found that adding ADT to radiation increases overall survival in high risk groups. Gleason 9 would be considered high risk. Here's an article on the subject.
You are not going to get any benefit if you keep on with ADT next week. Instead you will lose the opportunity of assessing the outcome of the RT. I have written it at least 3 times before:
Watch for total testosterone and when it gets back to 300 or more notice the PSA. This will guide you further.
I sent you a PM. I'm sorry the DF doctor was misinformed - why didn't your father correct him? Your father is metastatic and should be on permanent ADT. He will become CR sooner if he doesn't.
No it was my responsibly, I provided them with all the medical files, and then you get a written second opinion. But I’ve send a message to DF hoping that they will correct it.
I don't like the idea of written second opinions with no opportunity to interact with patients. Telemedicine is better, but nothing is equal to live interaction. (Imagine practicing clinical psychology like this!). Sometimes one's doctor will reach out to colleagues for opinions - that's OK too, because he knows the case well.
Do you know what kind of scan they used to detect the mets?
Your father has been confirmed as (M1) metastatic, with currently castration-naive prostate cancer. The U.S. NCCN Guidelines for Prostate Cancer for this situation are outlined in Chapter 8 at this link:
Systemic ADT seems to be appropriate, per the Guidelines. Adding some other systemic treatment earlier rather than later has also been supported in recent years by various clinical trials results (e.g. docetaxel, abiraterone, etc. see Guide 15).
Hope this might help in organizing one's thoughts and questions as you keep discussing Options with your doctor(s). You might also print those pages and take them to the next visit(s) to help guide the consultation discussion(s).
With confirmed bone "mets", you might also want to discuss the options of either Zometa (zoledronic acid) or Xgeva (denosumab) bone agent treatment with your doctor (see Chapter 5, page 43 of the Guidelines).
Many men here have gone down this ADT or "ADT-plus" path during the courses of their metastatic disease (I have been on ADT for almost 7 years.) You and your father can continue to tap into their support and the sharing of their experiences on ADT.
Much of the initial fear and uncertainty can fade as you get past these initial months of uncertainty. My experience was that it felt better to get established on an initial treatment plan that worked, gave me some breathing room, and allowed me to continue with more routine monitoring and periodic scans.
Hope the Monday test goes well. I'm on permanent ADT. Over 3 years now. Please get out of stress mode. It does no good. Do something you enjoy. This is a marathon and not a sprint. Best of wishes.
My fathers PSA is undetectable (which means >0,01 with this measurement, perhaps we should have another test that is more detail?) and his T has dropped from 23 nmol/L to 0,6 nmol/L. This must be a good thing right? My father is still very concerned and scared but I tried telling him that no matter what this is GOOD news.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Decision time – looking for opinions/advice please
If Pluvicto fails…what next?
radiation decisions and second and third opinions 
What's my next plan of attack?
