On path for an MRI-guided SBRT

[drmoose]

April 2023: After not too much activity on my side on this forum (aside from following a few threads), thought it time for a little update, as I am getting closer to a "definitive" therapy, after my initial diagnosis in Oct. 2019.

In the last year or so, I have been doing imaging - PSMA PET-CT in March-23, and PSMA PET-MRI Dec-21, plus 3T MRI's, last one this March, showing no progression, in addition now to three rounds of "non-standard" hormone suppression therapy based on sub-sublingual DES. The MRI continues to show "suspicion of extra-prostatic extension EPE" and "seminal vesicle invasion (SVI)" but neither is confirmed by the PSMA (MRI or CT).

In addition to the Karyometry showing favorable "grade 1", I managed to get the Sentinel exosome urine test from miR Scientific last October, which showed a "favorable intermediate" profile.

I got to the point that I did not want to keep doing ADT, even intermittent, if possible, so I am planning to do an MRI-guided SBRT in the next few weeks in Zurich (I live nearby). They do not use SpaceOAR here and claim they do not get significant side effects without. The Mridian MRI-linac from ViewRay has been here in Zurich for a few years, the operator there said there are about 80 world-wide currently, but it looks like this may well be soon established as standard of care for those qualifying for radiation.

I am considering adding ADT with the radiation - I can get Orgovyx (Relugolix) in German for about 250$ per month. GoodRX says it is more than $2,500 per month in the U.S. ... Orgovyx just got approved in the EU in October 2022. There is evidence, both trials and anecdotal, that the ADT would have synergistic positive effects with the radiation in terms of killing cancer cells over healthy cells.

Most of what I have done so far has been "non-standard" - there is obviously some potential risk (and some potential benefits I hope) - but this is where I am landing. Thought it might be interesting for others to hear about this ... will report post-SBRT eventually.

In the end, I am "betting" that I do not have an aggressive cancer - but the reality is that it is difficult to determine this with anything approaching certainty - so after a lot of soul searching - and probably too much "learning" - this is where I am headed.

In the meantime, like many on this forum, I feel like I know MUCH MORE now about prostates than even most general practitioners ... and for better or for worse more than I ever really wanted to know! But I hope we can all keep putting it to good use, pushing the system to keep getting better. The progress being made is incredible - and yet we still have a ways to go to.

[Scout4answers]

Following your progress with interest.

[Seasid]

I had it with Electa Unity. The margins where 1mm. 38 Gy to the prostate.

[drmoose in reply to Seasid]

thanks. The radiation oncologists here are talking about 5x8 Gray to the main lesion, then lower doses to the outer regions, and they also drop it near the "sensitive" parts like the bowels ... I did not hear their exact margin number yet but will ask. I think the ViewRay system has a good reputation, not sure if the Electa Unity is in Switzerland yet.

[Seasid in reply to drmoose]

That is a Swedish system. We have it in Sydney in Genesis Care close where I live. I also had 5 fractions. I had a PSMA Pet scan first. The Cancer in my prostate was CRPC with an SUV max of 14. The prostate was 95% full of cancer. I am polymetastatic but the pet scans didn't find any mets at PSA 1.25, only in the prostate. I am on Firmagon ADT injections (Degarelix) and I actually prefer injections every 4 weeks rather than tablets daily. I was diagnosed 5 years ago. I radiated my prostate in order to delay more advanced treatments. My PSA dropped from 1.4 to 0.37 five months after radiation. I just hope that it will continue dropping the PSA further. I could say that I can sleep better now. The radiation was effective. It is questionable will it extend my life or not, but I definitely feel relieved that we killed the HRPC and it will not spread to the surrounding arrond the prostate. The RO will follow me for 5 years every 3 months.

[maggiedrum in reply to Seasid]

Seasid, I continue to wish you the best for your continued battle. You didn't say when you started your ADT relative to starting your radiation. The common protocol SOC in the US is to start ADT a month before the start of radiation for a month and to continue the ADT for a significant time after. If you started the ADT well before the radiation and did not see a dramatic decrease in PSA then it would seem likely that the dramatic decrease was due to the radiation. But if it was not done well before the radiation then it may be hard to say that the decrease was due to the ADT or the radiation or both. Adjunct ADT/radiation is supposed to be synergistic in reducing the size and quantity of the cancer enabling radiation to be focused on smaller areas.

[Seasid in reply to maggiedrum]

I had early chemotherapy plus ADT for 5 years. My nadir PSA was 0.12. I didn't have any scans for almost 4 years after the last bone scan after my early chemotherapy.

Therefore end of last year I had a PSMA PET scan after my PSA doubling time was 2 to 3 months.

I wanted actually to irradiate my visible mets but the scans didn't find any. Therefore we decided to irradiate my prostate in order to delay more advanced therapy.

I have a feeling that I can sleep now better after killing the CRPC in my prostate with radiation.

It may not extend my life, but at least I don't have to wake up multiple time during the night to go to the toilet.

Everyone is different. You have a team of doctors therefore ask them for your options.

For 90 years old people ADT is delayed until they get bone pain. After that they start ADT.

I also delayed ADT until I developed sciatica pain. Seven dayd after starting Degarelix my pain disappeared.

[maggiedrum in reply to Seasid]

I would have done the same thing you did but I had the RP at the start. The PCa had already escaped the prostate capsule and the seminal vesicles so all that was removed but all the surrounding tissue could not be removed because it would have been too damaging. He took out my right side lymph nodes which must have helped but had to leave the left side because of scar tissue from a previous hernia repair. That side is where my new mets are up and down.

I was too worried about the ADT because of my pretty serious depression which I suspected was T moderated because of its monthly cycle. I only started later after my PSA was shooting up. My concern about the depression was absolutely correct so I stopped that and won't redo. It will kill me indirectly.

I got a second opinion by a better radiologist (the head of the cancer radiology center at the University of Washington - the best in the state). I could have opted for radiation but since my cancer had already spread too far it would have had to include my entire pelvic floor, bladder and bladder neck, and some of my large and small intestines. I made my personal risk assessment and still think I made the right one for me - no radiation. If it had been a smaller area I would have tried it like you did.

I agree it is a very worthwhile therapy, especially in your case leaving the prostate in. My prostate was cancerous in every quadrant and beyond. MRI's with special contrasts and a bone scan also done.

We all do what we think is best for ourselves and have to live and die by those decisions. I wouldn't do anything different based on all I have learned since then. Chemo is my only therapy per SOC and what my insurance will pay (like not Pluvicto even if it becomes available again). And no chemo for me. I've lived a mixed life so far and gotten to 72. I have a great supportive wife who knows exactly what and what for I am doing. Chemo and multiple surgeries helped with my brother's non-hopkins lymphoma of his neck and spine. It almost destroyed him but he is doing extremely well but his MO does recommend some more spinal shots.

So, kudos to you for taking care of you cancer so far. I wish you the best with you plan of attack. And I personally would not second guess what you are doing. Or anyone else. There is no one "right" answer. In some cases it will be obvious that a man made the right decision for them for the price and risk and QOL they chose. Some will die much sooner than they hoped but whether they could have made better decisions will not always be known.

[drmoose]

One advantage of Orgovyx is it suppresses testosterone quickly, like in a few days, where Lupron and other GnRH agonists often take a few weeks (and have testosterone flairs). Testosterone has also been shown to recover more quickly with Orgovyx when stopped too. It's just bloody expensive in the U.S. - something like $2,600 on GoodRx, but more like $260 in Germany. For a month's supply.

[j-o-h-n]

I get my Orgovyx by bidding on Ebay..........(free pick up from Brooklyn)...

j-o-h-n <===<<< Senior management is about to spike my spikes....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/18/2023 7:51 PM DST