Prostate cancer

I hope somebody can help with there experience

Since the cancer has already left your prostate, they usually want to do radiation of the prostate, eventually, to stop it from continue to propagate the cancer.

Really need to see the pet scan results to know what is going on. It’s very possible this can be treated and you can continue to live many years. I know people with much higher PSA’s than you that have lived many years.

The lower back pain could be due to metastasis and treatment could reverse it.

Let us know what the results of your PET scan are and what the doctor says you need to do.

Thank you

I agree with Jeff...dont be discouraged. I expect you will be given ADT therapy which can stop the metastic spread plus radiation and maybe chemo. the goal is to first stop the cancer spread /shrink tumors and radiation to destroy what is left...however, you need to quickly get moving on this, have good oncology group with exp with prostate cancer and get therapy started...this is not a wait and see situation. PET scan will reveal extent of disease and dictate therapy.

Lots of info on line and you have lots of company...take heart and get moving..we all wish you the best..!

Here's my case so far. Diagnosed Gleason 9 - 5/6/25, also not a surgical candidate - referral to genito-urinary oncology; Since I am also a heart failure patient, referral to cardiac oncology scheduled. PSMA PET - 6/6/25 showed multiple local and distant metastasis of lymph and bone (vertebrae). ADT (Orgovyx) started 6/7/25. ARSI (Nubeqa) added 6/10/25 when Dr. got PET results along with referral to radiation oncology. Fiducial markers placed 9/2/25; Radiation to prostate (IGRT x 20) begins 9/30/25. DXA scan scheduled 11/12/25. GUO follow-up scheduled 12/10/25. That's it up to now.... Oh, and between Oncology and Cardiology, throw in half a dozen blood tests along the way to monitor things from pancreas and liver response to medications, to cardiac enzymes and everything in between.

Sorry you had to join our little club. Worry does nothing but make it hard to sleep. I find it better to just get really pissed at the cancer and determined to fight it. Will it kill me? Eventually, maybe, but not today. Best wishes and let us know your progress. My radiation treatment T-shirt...

One more thing...I'm still looking at the green side of the grass so, today's a pretty darn good day! 😁

It sure appears you’re getting the right treatment. This is about all you can hope for, They will be able to eliminate the active cancer and get you into a state of remission.

They put you on the right drugs. ADT is sort of mandatory but Nubeqa Is a great choice for somebody who has heart issues since it is the one drug that has the least side effects.

I have gotten all those blood test you referred to every month for the last eight years. They’re really important to know what’s going on in a long-term.

Good morning,

As always we are greatful for everyone asking questions and sharing personal experiences.
Shifting gears, my question pertains to Cyberknife radiation. Had a prostatectomy 7-2-25. Pathology showed surrounding lymph nodes were clean. Post prostatectomy ( 8 weeks) my PSA was .30, two weeks later PSA was .43. Second PET scan did
not detect additional cancer. Been reading about Cyberknife radiation, my question is Cyberknife radiation a viable alternative post prostatectomy?

@ mkostelecky1962
SBRT (cyberknife) is not usually used in your case. Your doctor should have seen that your PSA was rising what it should’ve become undetectable after surgery. This is not a good thing. You should probably have salvage radiation as soon as possible.

The fact that you have done nothing with your PSA hitting .3 to start means that your medical team is not really competent. You should find yourself a center of excellence and get treated . You are looking at a Serious case that needs to be addressed immediately.

The following recommendations for when salvage radiation should be done for somebody that has had prostate removal and has had their PSA start to rise. As you can probably see, you are not in a safe place, something should already have been done. Be proactive and find yourself a doctor that knows what they’re doing. If you need help finding a center of excellence tell us where in the country you live.

From Ascopubs about what PSA to do salvage radiation.
≤0.2 ng/mL:
Starting at this level maximizes disease control and long-term survival. Patients treated at PSA < 0.2 ng/mL achieve higher rates of undetectable post-SRT PSA (56-70%) and improved 5-year progression-free survival (62.7-75%).
Delaying SRT beyond PSA ≥0.25 ng/mL increases mortality risk by ~50%.

0.2–0.5 ng/mL:
Still effective, particularly for patients with low-risk features (e.g., Gleason ≤7, slow PSA doubling time). The Journal of Clinical Oncology recommends SRT before PSA exceeds 0.25 ng/mL to preserve curative potential.

0.5–1.0 ng/mL:
Salvage radiation remains beneficial but may require combining with androgen deprivation therapy (ADT) for higher-risk cases.

This article discusses the above;
https://ascopost.com/news/march-2023/psa-level-at-time-of-salvage-radiation-therapy-after-radical-prostatectomy-and-risk-of-all-cause-mortality/

@mkostelecky1962
I forgot to ask what was found in your prostate after surgery.

Were any of the following things found? extra capillary extensions, intraductal, Cribriform, seminal vesicle invasion or EPE?

Any of these could be what caused your PSA to rise immediately after surgery