We received some good news! The Pet-PSM scan didn't show mets. So the starting point is looking less bleak now. Of course it remains very serious, since it is an aggressive tumor. This week we need to talk about how to move forward, choosing between radiation + injections or an operation.
Any tips on what to ask the doctors?
Thanks for the support.
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First message
While still being in the midst of a full diagnosis this forum had helped me a lot so far. My dad is as we speak getting his PET scan to see if and how far his PC had spread.
It all started in Feb when he did a blood test after having peeing problems for quite some time. His PSA came back in the high 90s so thats when the alarm bells went off.
So far we only received bad news, since his Gleason score was also very high with 9. That was a shock. I already read so much so i feel quite prepared for what is to come. Really hoping that it is not spread everywhere, and mostly local, that would be the best possible news in this situation i guess…
Thanksful for this community already and happy my dad will be taken care of by an specialized team in an academic hospital (Radboud) here in the Netherlands.
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It is relatively new in Europe but has been in use for some time in the US.
The cost should be covered by insurance and they are more convenient than the injections plus other benefits if patient compliance is good.
Many people will weigh in RT vs Surgery, I just wanted to let you know that if you choose RT it is not just injections.
I suggest you ask about Orgovyx.
You did not say what his staging was, for example mine is T3b.
This can have a great influence on the choices. I didn't have much of a choice, I was told if I had surgery I would likely have incontinence/ED and almost certainly need radiation as well.
the most common e.g. Decapeptyl (triptorelin), Zoladex (goserelin), Lupron/Eligard (leuprolide, very common in the US but not used much in Europe). All of these are long lasting injections or implants (1, 3 and 6 months).
LHRH antagonists.
These are more recent. The first was Firmagon (degarelix), a monthly injection, and now Orgovyx (relugolix).
Antagonists tend to suppress testosterone more quickly and it recovers more quickly. They tend to have less cardiac side effects.
If your father has any cardiac issues an antagonist will probably be recommended. Firmagon can have injection site issues and requires special procedures, the monthly appointment may be an issue for some people.
Orgovyx is probably the most expensive option (it is 125 euro per month in NL) but it should be covered by your insurance. The drug is eliminated quickly so taking it daily at around the same time is important.
Orgovyx is relatively new in belgium and my Urologist was reluctant to prescribe it but my Radiation Oncologist was OK with it. It has been used a lot in the US.
The therapy with the best record of success is brachy boost therapy. That entails whole pelvic external beam radiation + brachytherapy boost to the prostate + 1 year of ADT.
Getting experienced brachytherapists can be hard to find in the US as well. It is definitely available in the UK, and I think at Oslo University. If hard to find, the POP-RT protocol had impressive results, albeit with 2 years of ADT instead of just 1 year for brachy boost therapy.
The POP-RT trial was one of the reasons I chose WPRT (2 of the 3 centres I consulted offered WPRT, the other PORT with an MR Linac).
WPRT is pretty well established in Belgium. Prof De Meerleer (UZ Leuven) is one of the most influential ROs and a co author of the EAU/ESTRO guidelines for PCa. He is a proponent, even though the guidelines say the benefit is not proven sufficiently to recommend it.
In the Netherlands the opposite is the case, ulfhbg and I were helping someone from the Netherlands (Rotterdam?) who was node positive and could not access WPRT and so came to Leuven in Belgium.
I have seen there is a trial of SBRT to simulate Brachy using, if I remember correctly, two fractions of 10Gy (with MRgRT?).
Dr Kishan at UCLA has a trial of SBRT for high risk that is expected later this year. He uses 40 Gy on the prostate and 25 Gy on pelvic lymph nodes (both in the same 5 treatments).
1) If Plan A is not successful, what might be alternatives for Plan B?
2) What criteria or measures shall we use to define success? What does the best possible outcome look like? What does the most probably outcome look like?
3) Doctor, if you were me, what would you do?
Also, feel free to ask each doctor to explain his/her reasoning if any of his/her recommendations differ from other doctors' recommendations.
Your father is in the same position as me when I was diagnosed - Gleason 9 and no apparent spread. I saw the urologist who was already pencilling me in to play with his Da Vinci robots. He said no need to bother with spread as nothing showed up on the scans. I asked to see an onco, which was a breath of fresh air, a much more scientific approach where she calculated that I still had a significant risk of spread at sub 5mm level (which doesn't show up on scans). She set out a plan of 37 sessions of RT (VMAT) to the prostate and the higher risk surrounding tissue. I also started on bicalutamide straight away and had a prostap injection 2 weeks later (2 year course).
I am now just 6m away from my last injection and it has gone very smoothly. No SE's.
I have a friend who saw the same urologist with just G7. He received the same assurances. He had an RP. 2 years later he has developed mets on his lymph nodes and his hip bone and is having salvage RT and ADT.
RT has come on in leaps and bounds over the last 10 years whereas RP has hardly changed.
▪️Chances to be incontinent (there are degrees of incontinence and kegel training before the operation can help)
▪️Chances of erectile dysfunction?
▪️What is my risk of positive surgical margins? (This influences the chance of needing further treatment.)
▪️Do you use a robotic-assisted approach or open surgery? (Robotic-assisted can have better recovery outcomes.)
▪️How long is the expected recovery time? (For urinary continence, erectile function, and overall activity levels.)
▪️Do you offer penile rehabilitation post-surgery?
▪️Will I need a post-op PSA test at 6 weeks? What PSA level should be expected?
▪️What is the risk of lymphocele formation after pelvic lymph node dissection? How is it managed?
Questions for Radiation Oncologist
▪️How many sessions?
▪️How long will I have ADT? When is it started (it will be before start of RT)
▪️Can the treatment be done on the MR Linac (possibly less adverse effects and no marker implants or rectal balloon needed)?
▪️What followup tests will there be? How should I expect PSA to change.
▪️What short and long term effects can I expect? (urinary, rectal, sexual)
▪️Should you add Abiraterone? (as recommended in the EAU guidelines). If you opt for this you will need to pay for it youself like I do (126euro per month from Germany)
Choosing between the two comes down to the medical stage (the medical team will advise) and your father's personal preferences.
Many people have side effects on ADT: Hot Flashes, fatigue, loss of libido, weight gain and loss of bone density (osteopenia/osteoporosis).
Clinical Trials
There are a lot of clinical trials ongoing at Raboudumc some of which you may be eligible for.
Clinical trials can give you treatments that you would not be able to access outside the trial.
If interested ask about them. If they suggest a trial make sure you are OK with it. Post here to ask input if unsure.
Abbreviations
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I was similar. Had psa of 18, prompting mri, showed evidence of cancer so had biopsy showing Gleason 5+4 and evidence it had spread to nearby lymph nodes. Had Pmsa Pet scan and thankfully no other met. On Orgovyx since Aug, gold markers placed early Nov. then 44 rounds of radiation ending Jan 28. Blood test in March shows psa down to very good level. Bc it had spread I was not a good candidate for removal and frankly, I was relieved to not have to have the surgery. I am about to turn 63 , feeling pretty good, and thankful it's not worse.
I am also a Gleason 9 without spread on PSMA. The surgeon said I should do radiation, maybe my age 75? They did a computerized test "Aptera AI" and only sentenced me to 6 mo ADT
I recommend taking it one step at a time. Don’t just jump into radiation or surgery because that’s what the urologist or oncologist says. Start with the hormone pills like casodex first and see what it does to your PSA. Then add Lupron injections and wait and see what happens. These might control it just fine. They are controlling mine and have been for almost 3 years now along with a sugar free, modified keto and gluten free Whole Foods diet. PSA is .8. Down from 796 when I started. See my profile. Take your dad’s age into consideration. Radiation or surgery might be worse for him than the cancer.
Congratulations on the clean scan! I too recently had a clear PSMA scan after 2 years of Lupron only and dramatic lifestyle changes, mostly food. I also had my prostate removed at Mayo in 2021 when this all began. I did have 1 met on my pelvis and had 3 radiation treatments. In March 2024 I stopped the Lupron and went on Ivermectin along with the exercise, diet and supplement changes. The clean scan was 4 weeks ago and I'm praising God for His blessings and healing!
Would you please be kind enough to update your dear Dad's bio. It will help him/you and help us members too. Thank you and we can discuss our tarriff switching over dinner at the Masa in NYC tonight...... (your treat)....
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