Prostate cancer radiation failed

Thank you.

thank you.

No metastasis has shown up yet. I had cyberknife a year ago, but psa still high. The doctor said I chose the wrong treatment and should of had a full pelvic. Patient bashing.. I said well I'm the patient doc. If that was the wrong treatment, then why the heck didn't be a little more doctorish and tell me. You gave me that as a choice and now after its done you tell me it was wrong and there is nothing more your center can do for me. So they send me off to an oncologist. Im not on hormone because I had a heart attack when they did the treatment.

Thank you.

Thank you. Just cyberknife, but did not do hormone.

Thank you. Will look at some.

Thank you.
When were you first diagnosed? July 23
What was your Gleason score? 7
What stage were you initially and what stage are you now? 3
What was your initial treatment, surgery or radiation? radiation... cyberknife
What was your initial PSA? 52
What was your lowest PSA after your initial treatment? 19
Have you had a PET – PSMA scan and if so, what does that show? Yes, showed local to prostate. But the doctor said I chose the wrong treatment, but cyberknife was one of 2 he recommended.

Was the choice between SBRT (cyberknife) and IMRT (affects larger area, also more side-effects)? I'm guessing a prostatectomy wouldn't have been an option, since your cancer (like mine) had already escaped the prostate.

I'm a layperson, but I don't think it's normal to expect radiation alone to eliminate advanced cancer, so it wouldn't make sense to blame yourself for making "the wrong choice."

In most cases I hear about, oncologists combine radiation therapy with ADT, ARSI, and sometimes even proactive chemotherapy to knock advanced prostate cancer back with a 1-2-3 punch. I do understand that your heart condition adds some challenges.

jmonte, will you have a repeat PSMA?

I understand your frustration. You expected a cure with Cyberknife and didn’t get one. I expected a cure with brachytherapy and didn’t get one. I didn’t have genomic testing run on my initial pathology and I assume that you didn’t either or both of us may have chosen different treatments like surgery. All of that is water under the bridge so to speak.

It’s ok to be pissed, and sad, and disappointed, and betrayed, and confused and heartbroken and you’ll have to get past that at some point, and yes it’s hard to do so. Stage 3 is not a death sentence. You may be able to beat PCa or at least die with it and not from it.

Here are some things to think about: not medical advice since I’m only a fellow Stage 3 PCa patient.

I think it’s time to get a decipher score and understand how aggressive of a cancer you’re dealing with. That can help guide you and your care team with your decisions. My score revealed a particularly aggressive cancer so my treatment plan is also an aggressive one.

Depends on your cardiovascular health, you MIGHT be a candidate for salvage prostatectomy. I’ve had one. It’s not a picnic, but it can quickly debulk the tumor and make the size of the battle smaller. Ashley Ross at Northwestern Medicine in Chicago is one of the few surgeons in the world that can perform this delicate and difficult operation. He was my surgeon and I highly recommend him.

IMO you need a world-class oncologist to evaluate your situation and medical history and come up with a treatment plan. I went for the best of the best and hope you do too. I recommend Dr. Timothy Kuzel from Northwestern medicine. https://www.nm.org/doctors/1851325088/timothy-m-kuzel-md
MAYO probably has someone too, but I don’t know anyone there. You may have to travel to get excellent care and you know, if your situation isn’t worth it, what is?

If your situation is similar to mine, you’re going to need first and second generation ADT and additional radiation. ORGOVYX is well tolerated by people with heart disease and ZYTIGA or its generic equivalent is also supposedly well tolerated by people with heart disease. I’m on both and the side effects are quite manageable.

If your CyberKnife treatment was limited to the prostate itself, you might be able to receive IMRT to the prostate area and the lymph node basin. I received 31 sessions of IMR to the pelvic lymph node basin. I was scared shitless of radiation and honestly, the side effects were not a big deal.

My care team put my odds of cure at 70% for going through all three steps. They’ve also told me that should the cancer come back I should with any luck be able to still live well into my 80s and you know, I’ll take that.

You’re going to have some tough days ahead. I speak from experience. But you’ll never know how tough you are unless you try. I didn’t think I could go through everything I’ve gone through and was afraid of failure. I’m on the other side now and people tell me how brave I was. I didn’t feel brave then, but I do feel accomplished now and I’m going to see this end.

I hope you make that choice too. We’re here for you.