Decipher risk: prostatectomy RP vs radiation.

@larrypt3b
You really should ask them to give you Orgovyx Rather than Eligard. When you finish your two years, you will be back to normal within three or four months with Orgovyx. It will take a lot longer for your testosterone to return if you have Eligard. Orgovyx is a pill you take just once a day. People frequently have fewer side effects with it than they do with Eligard.’

Radiation you have sounds about standard for what has happened.. Do not expect a cure. With the cancer that you have, you can go into remission for a long time, But a cure is pretty much out of the picture.

When I had my salvage radiation, I had 8+ weeks of it. They gave lower doses, which resulted in my having no side effects at all. You’re going to have higher doses, which can cause proctitis and a few other issues. You could ask the doctors for specifics. Some people have problems because of it hitting the rectum and end up with diarrhea or other similar issues, Having to go multiple times a day. This may not happen, but be prepared.

SBRT to the hip is no big deal. I had it done to my spine three years ago, Had a metastasis wrapped around my L4, But it was successful after three sessions. No side effects at all, And my PSA dropped to undetectable within a month.

Now some information on what ADT can do to you, Something, the doctors really don’t get into.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I run on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If you have that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. I would start sweating profusely from my head dripping down into my eyes, My chest would get wet and so with my under arms After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones and drugs that can do this, speak to your doctor If you have that problem and come back here and tell people about it and we can give you some information about that specifically.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily. After eight years on ADT, I wear an Embrlabs Wave two device, which really helps control the hot flashes and hot sweats at night.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this. You need to be taking calcium and vitamin D every day, your doctor can confirm this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people do gain weight. The average is about 5 pounds but Some gain more. Just something to be aware of you can control it.

I was in the same spot as you with surgery vs radiation (my decipher is .9) and I chose RARP without hormone therapy. My PET scan (not PSMA) showed no spreading of the cancer. In another post I explained why I chose as I did and how it turned out (at that point). Here is the latest so you can have some info: 18 months after my RARP my PSA rose to official BCR status (surgery failed). Biopsy of prostate and some lymph nodes showed negative but sem ves were invaded and there was some evidence that surgery didn't get all the cancer. BTW: for me urinary side effects from surgery didn't happen. For what it's worth, the post surgery biopsy is information you don't get from radiation.
PSMA Pet scan showed 2 spots of cancer, one in hip and one at a lymph node. Since there's less than 2 they term it oligometastatic. Not great news. But last week I saw Radiation Oncologist locally and Dr. Kwon's team at Mayo. They want to SBRT the hip cancer spot (one and done) and then do a broader radiation therapy (5 weeks, every day) for the pelvic area. This week I will start Casodex for 2 weeks, then Eligard (6 month dose) for 2 years. I also get fitted for my personalized "bean bag" for the SBRT. Both cancer teams used the words "potential cure" in association with the treatments. (The broader radiation is still under review with Mayo and may change.)
Sorry this so long, but the point is that this is the option I left open by doing the surgery first. I'm too ignorant to know what I don't know, so I have to trust the Doctors but I have to say that they seem long on positives and short on details especially when it comes to side effects of both RT and Hormonal therapy. In for a penny, in for a pound.
Keep the faith and remember that we're all blessed in abundance or in need.... Peace!

I am 64 (63 at diagnois) with 6 tumors (2 are gleason 7 (3+4) with cribriform : 4 gleason 6). Decipher .72. Bilateral and capsule contained. My oncologist, Joseph Wagner (a pioneer in robotic surgery) advised that surgery vs. SBRT are "equipoise". One was no better than the other and both curative intent. Second opinions at Smilon (Yale) and MSK (NYC) matched Dr. Wagner's recommendation. I am wrapping up treatment - 5 sessions of SBRT and 120 days of orgovyx. Peaks and valleys. I opted for radiation after my consultations, reviewing data from NHI/Mayo, Mark Scholz information/youtube explanations, and Lots of questions with Dr. Wagner - his advice remained "both work - you are a good candidate in either plan". I have no other health issues and value, as Dr. Wagner and Dr. Byun (my radiologist - Weil/MSK/Hartford Health) say - QOL (quality of life) matters. I feel fine (peaks and valleys from radiation and orogvyx) and am putting in 2-4 miles a day (which is hugely helpful) and skiing a time or two each week. There is a difference to me between Living and Being Alive. Heavy Phil, Jeff Marci, and others provide great input/perspective on this site. You got this. Good luck - it works out and the decision you make will be the right one for you.

@jonathanack
Thank you so much-but I don't feel like I got this at this point. Still a struggle, but I'm trying to get as much information in my head as possible to guide my choice.

I can totally see going the radiation route just because of improved QOL vs. 100 percent surgical side effects.

Leaning toward surgery, but as you say, it has to be your own decision and then you live on the highway you choose to drive on. Thanks for your supportive words-it really does help.

@fritzo
The surgical QOL factors (incontinence/ED particulary) are often temporary. If not temporary, there are treatment options to consider. The side effects from radiation are, from my doctors' advice and most of what I have researched, delayed. Appearing a year or 2 later in many cases (not all). Cribriform was my primary concern combined with a decipher score of .72. That concern remains. I am on ADT (orgovyx) - before and after my SBRT. In my consultations the doctors (6 in total - as noted) said one treatment was the same as the other - it was very clear. Neither treatment statistically was better when treating cribriform - physicians from MSK, Smilo, and HHC (Hartford Health). Cribriform, Intraductal, and BRCA (among others) are concerning for patients. I opted for radiation and believe that beneficial research and treatment is evolving pretty quickly for all of us for whatever for the upcoming years hold. Frankly, I consider myself lucky to have good doctors, good resources, and am often reminded of others in this world who face far more challenging cancers in childhood or in more dire situations. Our situations are not ideal, but treatable for the vast majority. Best of luck. Better days ahead and Go Easy.

Hi fritzo @fritzo,

re: you writing "It sounds like it is rare for most to have Decipher test information prior to a RP since it is a tool for accessing radiation options."

Sorry but Decipher is not a tool for accessing radiation options. It tells you how aggressive a particular cancer is. And yes, at a certain aggressive point, Decipher can help your doctor decide whether to add ADT atop the radiation.

The only test that I know of for assessing radiation options is PROSTOX. PROSTOX helps identify your risk levels "for developing Grade ≥2 or higher late genitourinary TOXICITY after prostate directed treatment."

PROSTOX Ultra tells you whether you are Low or High Risk for SBRT. And PROSTOX Standard reports Low or High Risk for CFRT (IMRT). The ideal is to score Low on both tests bc you are free to choose either SBRT or IMRT. If you score High on one of the tests and Low on the other, you still have a radiation path.

But! About 1-2% score HIGH RISK on both PROSTOX tests! We did! And the radiation door was slammed shut! I asked my husband whether he regretted getting the test. He responded immediately with "Absolutely not!"

He has an existing "weak stream" score on the International Prostate Symptom Score (IPSS) test of "5". That kind of "weak stream" plus a Double HIGH RISK for radiation!? ...yeahNO.

That said, prostatectomy is out too....

Just to report back; I had my consultation with my Northwestern surgeon last week. In regards to my Decipher score, he said that my score would have no impact at all on his decision making of how much to take.

As far as the procedure, Dr. Perry takes the anterior fascia sparing approach with a conserved bladder neck. Meaning, that the bladder neck is spared and conserved rather than being removed or cut open. The approach preserves more of the structures around the prostate, which sounds like it helps immensely with continence recovery (and much lower occurence of inguinal hernias). However, the stats for ED look to be unchanged.

In Dr. Patrick Walsh's book (kinda considered a bible) "Guide to Surviving Prostate Cancer," co-author Dr. Schaeffer (who oversees the program at Northwestern) wrote the chapter on RP and describes the steps he takes in surgery on page. 205.
Started this technique in summer of 2021: Instead of removing fascia (connective tissue) surrounding the prostate (laterally and distantly, just past the apex). Then, release the prostate from the bladder. Then, nerve tissue sparing decision-which is based on what they find, plus MRI findings. If cancer is pushing out, then the nerves are more likely to be harder to peel off (like white veins on an orange) is nerve sparing is not as likely on that side. After that, the prostate is released from the surrounding fascia (connective tissue), this step helps to bolster the urethral sphincter…helping continence recovery. Next steps, cut urethra and reconnect…robotic approach allows preserving of the bladder neck rather than reconstructing.

Dr. Schaeffer even has videos of the surgery on Youtube, which I am absolutely not going to watch!

Thanks for all the helpful responses. Lots of things to worry about still, but Decipher and surgery isn't one of them.