Decipher risk: prostatectomy RP vs radiation.

@jeffmarc I do attend those sometimes. Most in that group have much more advanced disease than I have so, I don’t hang around long.

I’m of the same mindset. Despite their long-term value, I would avoid clinical trials, unless all existing treatments have failed.

Just because someone has advanced disease, doesn’t mean an untested treatment should be given them. That’s not the way our system works, otherwise, there would be snake oil salesmen coming from around every corner.

There’s an approval process to follow, that (admittedly) never happens as quickly as someone needs. But, that’s because we follow the “first do no harm” mindset. Once a treatment demonstrates efficacy and safety, only then is it be made available. (Sometimes they’re made available off-label.) The process is time-tested.

(I did stop attending the AnCan meetings for a while because they were getting too argumentative; often too many egos at play. In fact, I would even direct people away from AnCan and towards forums where there was more sharing of information. I’ll have to drop in again to see how things are these days.)

@brianjarvis
Not much in the way of arguments these days, Actually, for the last few years. Rick can however get a little aggressive. He has tempered it.

We have more doctors in the meetings than we used to have. Almost always at least three sometimes four. Most of them are retired, of course.

If you listen to one of the previous meetings, you can speed it up to 1.5 or 1.75 speed and get a much quicker overview of what’s going on. It is real helpful for people who have Gleason eight and up or those with lower Gleason that have had reoccurrences or genetic problems.

The low and intermediate group might be more your speed, And they are quite calm, compared to the advanced meetings and deal with less aggressive cases. Getting over 40 people near 50 now to each meeting.

I see we concur on the clinical trial issue.

The weekly newsletter he sends out is worth getting, however, It would be useful information for you as well.

@rkenitz
Thanks for sharing your journey. So glad the surgery was effective. Good luck with the recovery process.

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.

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!

@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.

Thanks for the info! One thing I haven't mentioned here is that I have also had a triple bypass surgery in 2023. Not sure how that figures in but cardiologist did not think Eligard was contraindicated.
I was wanting to do a 3 or 4 month course of Eligard (the only one offered locally) but here they only have the 6 month injection. The info on the bone loss is certainly one that should be shared up front as patients could start taking the bone vitamins well in advance. I learned about Casodex on this forum and requested it (no mention of it before I brought it up.) I will inquire about the Orgovyx tomorrow. The Mayo group didn't bring it up at the consult.
As for cure, I'm not expecting it. I really have no expectations, only hopes for positive outcomes and will do my best to adapt to whatever happens. I could see an outcome where I have to play "whack a mole" with the SBRT to extend my time. I'm 67, in pretty good condition (for my condition). I feel good and hopefully can be around a long time. I will look into the Embrlabs Wave 2 device for the future.
Thanks for the comments!

@larrypt3b
They do not only have six months injections. They have one month, three months, four months and six months injections. You are much better off getting Orgovyx . Good to hear you are going toSpeak to your doctor and request this, If you tell them you want it, you have a much better chance of convincing them. That is what you would like to have.. You have to be proactive with prostate cancer, you can’t let the doctors Control your treatment without your feedback. Orgovyx does exactly the same thing as Eligard. Make sure to say something about this before you get the six month shot.

I was diagnosed with prostate cancer in 2010 At 62. I’ve had surgery followed my radiation, followed by a variety of drugs, and four reoccurrences. I have a genetic problem, BRCA2, which causes my cancer to keep coming back. I’m still here at 78. Make sure to get a hereditary genetic test. They are free and covered by insurance. Very important to know if you have a hereditary problem. If you’ve had prostate cancer, Breast cancer, Pancreatic cancer and some other cancers in your family it can be you have a hereditary problem.

@jeffmarc
Six month was the only dosage the clinic carried (makes the math easier for a 2 year course < laugh>). I have done the BRCA genetic testing recently; the sample is at the lab so no results yet. It can qualify me for genetic therapies if I have the BRCA gene. While at Mayo I was told that there is another genetic marker test I qualify to try since my father and aunt (father's sister) died from pancreatic cancer. I will probably do that as well. Knowledge is power?

@larrypt3b Oh yeah, knowledge is definitely power! If they can identify genetic markers, than than can do targeted drug protocols. If it was me, I'd be trying to do as many genetic tests as they have.

Now, I say this as a complete rookie in this realm. But, the development of targeted therapies seems like a huge development in care.

Wishing you well on journey- hang in there!