Surgery? Radiation? Can I have an independent suggestion?

@hanscasteels,
I would start Orgovyx and continue the indecision with further research knowing that treatment had begun. The optimal amount of time on Orgovyx before surgery or radiation is two months. Even though the drug is expensive, it works by blocking testosterone and synergistically disrupting the dna of the tumor. It shrinks the tumor before surgery and makes it more vulnerable to radiation.
I'd be partial to MRI guided radiation in five fractions. It gives you the closest margins. You won't know with certainty, because no one does--not other patients making the decision, not the oncologists, not the urologists.
Bless your choice.

Thank you. I really do appreciate the insight and advise! Sources tell me that, because of past heart folklore, darolutamide (Nubeqa) would be preferred. I'll have that conversation. I'll have the discussion about combining Nubeqa (darolutamide) with radiation therapy and short-term ADT (e.g., Orgovyx or an LHRH agonist), ensuring both local and systemic control.

There’s a recent video that shows that if you have cribriform the cancer is more aggressive than 3+4 would imply. If the cribriform Is larger than .25 mm then it is even more aggressive. Ask for a second opinion on your slides if the current person reading them doesn’t know the answer.

Here is a link to the video about cribriform and more.
https://www.urotoday.com/video-lectures/a-journal-club-for-patients-with-prostate-cancer/video/mediaitem/4452-unfavorable-histology-classification-aims-to-reduce-unnecessary-treatment-journal-club-jesse-mckenney-jane-nguyen-cornelia-ding.html
Yes Nubeqa Is easier on the user because there are fewer side effects than other lutamides.

The thing is it’s better off to start with Zytiga and When it is no longer desirable move on to Nubeqa.

Here is a link to an article discussing that.
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30688-6/abstract?mc_cid=c2dca8aa74&mc_eid=99575fc699
Surgery or radiation—— It is a toss up. Results are above equal from each. If you have surgery later, you can have radiation. If you have radiation then you can have surgery, but its capabilities are limited. If you have surgery, then getting an erection may be difficult,. If you have radiation that would usually not be an issue. If you have surgery, ask for nerve sparing surgery, which would increase the chance you can get an erection after surgery. Brachytherapy Is another option it is frequently followed by radiation.

I would not hold off on getting treatment soon. Cribriform makes a Gleeson 3+4 much more aggressive, the video discusses it. Try to speak to more radiation oncologists, and urologists about your options. ADT would at least retard the growth of your cancer while you think about it.

Are you able to get CyberKnife SBRT? MRIdian Would be better, less nearby tissue damage but I don’t think they have that in Canada.

There are other things you can do which don’t involve radiation, but I don’t think they are available in Canada they are HIFU, cryotherapy, TULSA-PRO.

Thank you very much. Good to know. Doesn’t exactly ease my anxiety… but better to be informed.

SBRT is the default at big Cancer Centres in Ontario, as far as I've seen so far, and I'd guess that's true in the rest of Canada as well. The treatment is painless — unless you count the discomfort of having to go to each appointment with a full bladder — and most patients have either no side-effects or very mild ones that disappear quickly (I was a bit unlucky in that regard, but it's nothing I can't live with).

Yes. Investments in new(er) technologies is not a northern priority it seems. I just hope that the irradiation equipment is not 20 years old

SBRT is actually reasonably new — not quite as new as proton-beam therapy, but still, it has the same survival outcomes as proton-beam, and much-reduced side-effects compare to radiation therapy 10–20 years ago. It was the hot new thing not many years ago, and the machines are still shiny. 🙂

I experienced side effects because I have stage-4 cancer, and my team wanted the radiation to spread a bit to try to catch anything near the prostate. We also used pretty-much the maximum dose for SBRT (60 gy), spread over 20 sessions.

Every cancer centre has a physicist who programs a specific treatment plan for you, then the big machine rotates around you, sending in radiation from all different angles so that you don't get skin burns like in the bad old days.

I don't think there's anything to fear there. Best of luck!

I can only share my own experience and how I got to my conclusion, the rest is for you to be an advocate for your own health and take the steps needed that you feel are best for you.

I also had a Gleason 3+4 and, at 54, was told that surgery was preferable to radiation because I had enough years left that I would likely experience the long term impact of radiation before my natural life was over. This was explained to me that this might be recommended to a 75 year old man because their natural life was shorter.

People told me here "surgeons will recommend surgery, radiation oncologists will recommend radiation" and it sounds like that's what you got. But I can say that I spoke to nine experts: 3 x urologist, 3 x radiation oncologists, 3 x medical oncologists - and this doesn't include other disciplines that have loads of experience with prostate cancer patients but don't do the procedure. In my case, every single one of them gave the exact same advice. Now, these doctors were not in the same hospital, network, practice or anything else - I intentionally varied my search across locations to make sure the opinion was as unbiased as possible.

Adding to this, I also read dozens upon dozens of research papers (not opinions, actual research) that back up their recommendation.

Their advice was unanimous but beyond that it made sense to me: we don't know how bad the cancer really is until we remove the prostate and analyze it. Radiation doesn't do that. Biopsies don't do that. PET scans don't do that. MRI's don't do that. All the other methods give little glimpses here and there, but removal tells the whole story of the prostate, even if it doesn't yet reveal if it's gone beyond there all the time (hence the need for PET scans).

I haven't yet had my surgery, it's in about a month, but while I'm concerned with life after this I am 100% confident that my decision to have it removed is the best one for me.

There are other procedures, but while some people have had wonderful success with them, they are still considered experimental or "on the edge" and in most cases I found the efficacy of these alternative procedures could not backed up, some of that is the lack of extremely in-depth research of the available data - which is limited because they are new enough as to not show too much long term data (as in 15 years worth).

This was my experience up to this point.

Thank you for your insight. Good luck!

FWIW, if you have to go on ADT I would choose an LRNH antagonist over an agonist. The antagonists take effect much faster and some, like Orgovyx, also wear off much faster when treatment is complete. I finished treatment with Orgovyx October 31 and my testosterone is already 50% of normal. Guys in my support group who were on Lupron said it took up to six months to recover. IANAD.