Decipher risk: prostatectomy RP vs radiation.

@fritzo While it's true that proton radiation is generally safer than conventional photon radiation it is not always the best choice for every prostate cancer situation. I learned from this post https://connect.mayoclinic.org/discussion/pc-treatment-prostatectomy-or-proton-beam-therapy/ by @jesse65 that there are situations where photon radiation is the better choice.

@brianjarvis
There is one important thing to be aware of in clinical trials.

There are usually two groups one that gets the drug and one that gets a placebo. In some cases, those trials are not good for people because they need treatment not a placebo. Some trials have actually been found so effective that they’ve given the people that were on placebo‘s the drug, But that is not the normal case.

Just be aware of this possibility if you are signing up for a clinical trial.

@jeffmarc While it is always worthwhile to view results from afar of a clinical trial, it is not always worthwhile to be a participant in one. I am very glad to this day that I just missed out on being a participant in a trial testing SBRT for wide area low dose applications that IMRT is typically used for. That trial had to be stopped early because of high toxicity. SBRT is so controllable that a program will eventually be worked out that allows SBRT to be used like IMRT for wide area low dose applications.

@jeffmarc Often, clinical trials compare standard of care against a new promising procedure or combination of promising procedures (rather than just against a placebo).

Where they may use a placebo is when they are doing an “add-on” study, like where a placebo is used in combination with a current standard of care (e.g., ADT) to evaluate the efficacy of a new drug (e.g., ARPI).

For example, there’s a study (MAGNITUDE trial) comparing Zytiga/prednisone + niraparib against Zytiga/prednisone + placebo. Zytiga/prednisone is standard of care in both cases; no one is getting a placebo alone.

I was offered the opportunity to be part of a clinical trial; I opted out of that opportunity. Though I understood the purpose and possible future value of a clinical trial, my attention was singularly focused on treating my disease. I did however choose to have my proton radiation treatment results submitted into a registry (https://clinicaltrials.gov/study/NCT02040467). Hopefully, that will help someone make a treatment decision one day.

I do not think that surgeons will take the Decipher into account when deciding on nerve-sparing. That will be driven by the Gleason score, the MRI images and what they see during surgery.

Your decision between surgery and radiation, as has been mentioned, should mainly depend on whether the cancer is likely still contained inside the organ, tilting the decision towards surgery (with nerve-sparing) or if there is a high probability of ECE or further spread, which would move the needle towards RT.

Thanks-I'm now realizing that Decipher really is a tool for radiology to access whether they need to add hormone therapy or not. In my case, if I did radiaiton, yes I would.

For surgery, with no spread on the imaging, it looks like options are potentially still open for nerve sparing surgery. If there was spread, I guess radiaiton would be the way the go.

I'm also seeing that surgical internal sphincter/ bladder neck area rebuild areas are big determinants of continence down the road. Guessing that's a surgical decision as they get in there.

@wwsmith
My wife was diagnosed with a serious lung disease years ago that had very few treatment options. I remember at the conference, lots of patients were seeking out multiple drug trials that they hoped would be the new cure. But, like you say, you need to treat your disease with what you know works, not on a hope and prayer.

@fritzo Even our current best prostate cancer scanning technology, the PSMA PET scan, is still very weak in that the smallest cancer cell cluster it can see is 2mm which requires 8 million cancer cells to create. Given this situation, it is very easy for some cancer escape to have already occurred and not be seen. Without definitive proof of escape, we are left with evaluating a lot of indirect clues towards the possibility that escape has already occurred.

The more you have of these high risk factors, the more likely that escape has already occurred. High Decipher score, intraductal, cribriform, seminal vesicle invasion, perineural invasion, extraprostatic extension (EPE), extracapsular extension (ECE), and even just lesions that abut the capsule wall. In my own case, I had a high Decipher score (0.81) and two lesions that abutted the capsule wall. The high Decipher score and the two capsule abutting lesions suggested that I needed more ADT than normal with radiation and that's why I had to use one year of ADT with just a contained 3+4 case.

Ahhhh-so looks like I'll need to get the doctors to order the various gene tests. Thanks for that update

@wwsmith I guess it's all about keeping on top of published clinical trials. Fortunately, seems like searches turn up all kinds of Prostate trial reports.