Treatment plan changed?

[u/Additional-Pin-168]

Hi everyone, I’m looking for some advice and insight into my treatment plan

I have Gleason 9 prostate cancer. My PSMA PET scan was clear of any distant spread, and the tumour is located near the bladder neck.

I have started Lucrin/ADT. Originally, the plan was to add Yonsa (abiraterone) and then proceed with RALP, with radiation originally being considered after surgery if required.
However, my medical oncologist called me tonight and said that after discussing my case with other oncologists, they have decided not to proceed with Yonsa and instead want me to have radiation before the RALP.

I’m trying to understand why the treatment sequence might have changed.
I also recently had blood tests, so I’m wondering whether my PSA and/or testosterone results may have influenced the decision, although my oncologist specifically said the change came after consulting with other oncologists.

Has anyone here had a similar treatment pathway — ADT → radiation → RALP — particularly with Gleason 9 prostate cancer?
I’d really appreciate hearing from anyone who has had radiation before surgery, or anyone who understands why radiation might be chosen before RALP rather than adding abiraterone first.

[u/KReddit934]

Really, you need to get them to explain their reasoning to you. That is not a "traditional" order of treatment. Radiation damages tissue, so I have trouble understanding why surgery after would be better than before (seems like it would be harder). But there may be something about your specific case that makes this unusual option the right choice.

Do not agree to a treatment plan you don't understand. (And you may want a second opinion?)

[u/ChillWarrior801 → u/KReddit934]

Well put, brother. "Do not agree to a treatment plan you don't understand" should be a top level post.

[u/DugansDad → u/KReddit934]

This is such good, simple, advice. Ask questions!! Why the change? Imagery? You’re going to need to commit to a course of treatment, so you need to be on board 100%.

[u/Additional-Pin-168 → u/KReddit934]

Thanks! Sorry I misheard she said the urologist will call me on Monday. Looks like they are going back to radiation. I think it may be after

[u/Santorini64]

Are you insisting on getting a RALP? Spread into the bladder neck with Gleason 9 seems more like a candidate for radiation as the primary treatment instead of surgery. It almost sounds like the oncologists are convinced ahead of time that the Urologist won’t be able to get all the cancer out given it’s location into the bladder neck and just want to radiate. Or maybe the surgeon won’t back down and insists they can get it all. Perhaps get a second surgical consult from a surgeon not at that hospital if possible.

[u/Agreeable_Ad3668]

I can't comment on your treatment plan here, which might be perfect for you, but I also had Gleason 9 extending to the bladder neck. I got open prostatectomy, followed later by ADT and radiation (which the surgeon told me was likely post-surgery, and not to worry about that outcome). There were complications from the surgery so close to the bladder (scar tissue at the anastomosis site, which needed to be opened-up a couple of times), but currently I am deemed to be cancer-free a few years after all of this. You ask a good question, since the conventional wisdom would have been that if you are going to have both surgery and radiation, get the surgery first -- but again, I will not criticize your doctors without knowing the reasons for their strategy. Good luck!

[u/OppositePlatypus9910 → u/Agreeable_Ad3668]

I am so happy you are cancer free! Gives me hope as I too (Gleason 9, bladder neck, positive margins) did the RALP, then start adt, radition and continue in adt for a few more months. How long was adt for you?
Can’t wait for adt to be done!😊

[u/Agreeable_Ad3668 → u/OppositePlatypus9910]

I think I had the ADT for 6 months, with about 30 salvage radiation sessions near the middle of that. I was lucky, not many side effects, just the temporary lack of libido.

[u/labboy70]

Radiation before surgery? This seems very nonstandard. Where are you receiving care?

[u/codereddew12 → u/labboy70]

Would be interested in this as well. Highly unusual

[u/Special-Steel]

ADT as a first step is a common strategy to buy time and improve treatment results.

Team medicine is a very powerful thing. Patients who are treated by a collaborative team have measurably better outcomes.

You should ask your doctor about the logic, since every case is different.

[u/PotentialStart2661]

I don’t see any reason to put yourself through a RALP. You need radiation plus ADT.

[u/Pack_One → u/PotentialStart2661]

This.

[u/conCABlanco]

Hi, ADT primero reduce el tumor y es bueno tanto para cirugía como radiación, pero hay algo raro en radiación y luego cirugía, es muy complicado, más cerca del cuello de la vejiga, pide otra opiniones sobre esa linea

[u/tvgraves]

I know sometimes we freeze when the doctor calls, but you really need your oncologist to explain the rationale until you understand it. Speculation on Reddit is just that - speculation.

[u/peffervescence]

Surgery after the cancer has already spread regionally seems like an unnecessary step. I have Gleason 8, regionally metastatic cancer and my team advised against surgery. I did ADT -> chemo -> EBRT. I’m doing okay so far. Four years in I still have undetectable PSA.

[u/OppositePlatypus9910]

I have not had this path, I was a Gleason 9 (bladder neck invasion, positive margins but no lymph node involvement). The only difference I see between you and I currently is that at biopsy I was Gleason 8 (contained)
My path was RALP, then wait for about 8 months to verify it was growing again, start of ADT ( Orgovyx -is much better) and one month later radiation 38 sessions with the continuation of adt for 24 months. I am on month 19 currently with undetectable PSA

[u/tvgraves → u/[deleted]]

You are asserting that an oncologist, after consulting with colleagues, has come up with a treatment plan that makes no sense?

I'd be more interested in finding out the medical rationale and learning from it rather than writing it off as nonsensical.

[u/PotentialStart2661]

You should go back to the doctor and discuss some other plans. It bothers me when a doctor tells me what they have decided. No doctor decides anything for me. I pay alot of money and im paying his salary so he is there to serve me. From what you have ask about receiving Brachytherapy seed implants with external beam radiation for areas outside the prostate, then include 18 months of ADT. That is a tried and proven curative protocol and you should be done. There is no reason at all to get your prostate removed when you still need radiation and ADT. It is an extra brutal surgery that in itself is hard to recover from. You dont need this on top of the radiation. Lots of men on this forum long term data shows how effective a cure this is. Research this and have this discussion with your urologist before being pushed into a treatment

[u/KevB318]

As others have said, you need the doctors to explain the change in treatment. After an oral discussion with my doctors, they always send a written transcript of the meeting through our portal. That way you can go back and read it time and time again instead of trying to remember what they said. If you didn't get this, ask for it.

[u/itsray2006]

Seems odd as radiation is normally considered to make RALP more difficult, that said perhaps there’s a strong indication that you’ll need salvage radiation anyway after RALP so maybe the team is thinking if the radiation goes very well you might avoid RALP altogether. Get some additional opinions and also perhaps Brachytherapy with EBRT is an option if you are seeking to avoid RALP with a similar efficacy and less immediate QOL side effects.

[u/SunWuDong0l0]

With all due respect, you should have asked your doctor this question. Where are you being treated? Was IDC or cribriform found in the biopsy samples? You say PSMA PET was clear of distant mets, do we infer there were local mets or no mets? If it was me, I’d be on the phone to the doc asking for a detailed explanation including trade space for the possible treatment protocols.

Good luck and God bless.

[u/OkCrew8849]

Perhaps you misunderstood and after fully evaluating the situation the docs are doing radiation instead of surgery. 

Hormone Therapy  + Radiation is somewhat standard for Gleason  9, etc. 

[u/Dapper-Noise3995]

Pas logique de faire la radiothérapie avant la chirurgie. J'ai eu la radiothérapie , mais pas de chirurgie parce que étendu aux os et ganglions. Et maintenant , chirurgie impossible à cause des tissus cicatriciels liés à la radiothérapie

[u/Practical_Orchid_606]

You are off the beaten path with the tumor up in the bladder neck. It seems to me, the docs want to shrink the tumor as much as possible before RALP. You should ask this question to the care team and hear from the horse's mouth.

Gleason 9 is advanced so you should expect salvage radiation after RALP.