Any other methods Better than PSA to monitor prostate cancer?

Posted by seasuite @seasuite, Dec 5, 2023

I've attached my PSA scores since they started saving in EPIC in 2000. While you can seen a marked increase around 2017, my Family Medicine Dr. said it was age related and well within the norms. Having read other's numbers, you could make a case that my numbers have always been low. We decided on an MRI in 2022 just for 'sh*** and grins' so to speak. I couldn't accept the PI-RADS 5 result and followed up with a confirming MRI shortly thereafter. My faith in PSA, as a solid indicator of PCa, was badly shaken.

My TPUS revealed G: 4+3=7 in one core with some risk factors and I began a tri-modal treatment plan (Orgovyx 4 months; Cyberknife Boost and VMAT). The later treatment is currently underway, 5/25 completed.

I continue to query Drs. and other sources about how to monitor progress and determine if any cancer will be remaining after the conclusion of my treatments. The only answer that I'm hearing is that
we'll be monitoring my PSA. You've probably guessed my question by now. I have very little faith in PSA and wish that I discovered my cancer years earlier. Has anyone heard of other methods to know the state of our PCas, hopefully zero, post treatment? I'm thinking I might have to buy a Ouija Board;-) Kindly advise.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@seasuite

Thanks for all the helpful replies!! I had a PSMA PET scan, thankfully negative, and a Decipher Grid, 0.57 intermediate risk, run prior to beginning treatments. I asked my RO yesterday if another PET scan would be helpful, post treatment, and she did not believe it would be. At minimum, your comments are helping me think that I'm not missing anything and can stop looking. Regarding insurance, I started Medicare/Medigap G recently as I worked until 71 and had a company plan. It has been covering well and allows a lot of flexibility.

Unlike with RP, when you have a writhing organ to dissect postoperatively, radiation patients typically lie on a table with 'tv sets' revolving around us and we are to believe it's working. I am indeed a man of faith, but, also believe in verification.

Best to all!

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Seasuite, Yes PSA levels vary greatly between people PRIOR to treatment. Mine went from 1.3 to 3.6 in a year and at 72 years old that was well within a "normal" range. I explained to my urologist that there was a family history of prostate cancer (grandfather, father), he still suspected BPH but scheduled an MRI anyway just to be sure. The results came back Stage 4 with mets to my pelvis. ADT and radiation was started almost immediately and PSA dropped to undetectable. My urologist said most of his patients in my condition would have had a PSA well over 20. After radiation or surgery, and after ADT is finished, PSA becomes a very ACCURATE and reliable indication of whether the cancer is still there. For folks like us, PSA velocity (rise in level over a years time) is more important than actual PSA levels.

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Wrothrock,
Very interesting comment and I certainly hope that is indeed the case for PSA post treatment indication of PCa! Your pre-treatment PSA was even lower than mine, so we certainly have similar results in that case.

May I ask how you came to such a definitive understanding? Were you able to locate research or studies about pre and post treatment accuracy of PSA as a PCa indicator? I've queried a few Drs. on this topic and none have mentioned your analysis. I've added the topic to my Monday meeting with my RO and will see if she concurs.

Given that being cancer free is the goal that we all have, I would expect to see much more written about this topic.

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@seasuite

Wrothrock,
Very interesting comment and I certainly hope that is indeed the case for PSA post treatment indication of PCa! Your pre-treatment PSA was even lower than mine, so we certainly have similar results in that case.

May I ask how you came to such a definitive understanding? Were you able to locate research or studies about pre and post treatment accuracy of PSA as a PCa indicator? I've queried a few Drs. on this topic and none have mentioned your analysis. I've added the topic to my Monday meeting with my RO and will see if she concurs.

Given that being cancer free is the goal that we all have, I would expect to see much more written about this topic.

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Seasuite,
I have found a wealth of information from The Prostate Cancer Research Institute. Their Youtube channel is full of presentations that relate to pretty much all of the phases and treatments of prostate cancer. I encourage you to subscribe to their channel and watch their videos. Very informative! https://www.youtube.com/@ThePCRI

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@brewste

You’re too forgiving. Stopping psa tests on me allowed it to rise silently to 985 and the cancer to metastasize to my bones. Incurable. Glad I’m in my 9th decade that something else will probably take me down first.

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Hi @brewste, welcome. Are you currently on any treatment?

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Lupron, Abiraterone, Prednisone. Palliative treatment only.

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Well guys got good news on Friday 12/08/23. My PSA at 6 months after proton radiation was 0.79.

Got a real smile. My PSA prior to radiation was 3.75. Still normal rate but was steadily rising for years. My journey started back in January with Mayo doing DME and MRI, February biopsies, March bone scan, April PSMA (UFPTI) , space/oar and markers. May started 30 rounds of proton pencil beam radiation treatments at UFPTI.

At 3 months after treatments my PSA dropped to 1.2. UFPTI oncologist/radiologist stated want it below 1 but may take a year or more to drop to it's lowest level and that point concentrate on if there are rising numbers again. Now at 6 month after treatment it is 0.79. Been a long hard journey but hope my future tests stay good.

Thought I would pass this along for those waiting to undergo treatments and wondering if radiation treatments will help cure their cancer. Again all will tell you we are all different and every prostate cancer diagnosis is specific to the individual. Mine was within prostrate (PSMA, bone scan, Decipher test) so that helped with the type treatment and radiation I got, where, and that I did not need to receive hormone treatments.

I encourage all to speak up, research, try to go to a provider with tons of experience and latest treatments. And get second opinions, asked questions, and use MCC to get others experiences. Regarding side affects that worry a lot on MCC prior to their tests and treatments. MRIs do not cause any discomfort and I had a balloon inserted and some type of injection to help with MRI.

The biopsies I had was transperineal with anethesia. I strongly suggest you get it done this way if at all possible. If I had not been told I had the biopsies done the day off and after I would even know it was done. The markers and space/oar are another matter. I was really apprehensive about them as I had them done transpernial but without anesthesia. They did offer laughing gas but soon realized did not need it. But even though some discomfort during procedure and could feel the space/oar for several months after it was nothing to prevent me from doing again.

I learned a lot from others realizing I was not alone in my apprehensions, questions, fear of the unknown. I want to thank again for MCC having this web site and forum. I was not aware of MCC when I was first diagnosed and could have helped a lot back then with my fears, anxiety and questions.

I hope I can help provide feedback to others just starting out on their journey and those like me recovering from the treatments and in monitoring stage.

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There is a blood test as well. Free and Total. Combined with PSA it is an excellent diagnostic tool. It convinced me to have surgery. A rising PSA though within limits on age was first indication of cancer. Had Robotic surgery November 8 this year. G 4+3. Margins all clear.

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I'm confident your radiation oncologist will tell you how PSA is the best way to detect an early return of prostate cancer after treatment.

Think about this...imaging studies operate at the macroscopic level, not microscopic. MRI, CT. PET, US, X-ray...all use reflections of some sort of energy (magnetic, radiation, sound) interpreted by a computer to produce simulated images which are fuzzy and certainly not able to discern structural differences smaller than our own eyes can distinguish. The PSA test operates at the molecular level. If it rise and keeps rising after treatment, the only question is where, not if, the Prostate Specific Antigen is being produced.

The difficulty for post-radiation patients lies in the continued presence of the prostate. That's when imaging studies may come into play.

Game plan in that case: follow the PSA frequently (every 3-6 months). If it keeps rising, investigate further with imaging.

Using the PSA to initially diagnose cancer, and using it to follow progress after treatment are two different ball games. Do not neglect it!

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@trusam1

I'm confident your radiation oncologist will tell you how PSA is the best way to detect an early return of prostate cancer after treatment.

Think about this...imaging studies operate at the macroscopic level, not microscopic. MRI, CT. PET, US, X-ray...all use reflections of some sort of energy (magnetic, radiation, sound) interpreted by a computer to produce simulated images which are fuzzy and certainly not able to discern structural differences smaller than our own eyes can distinguish. The PSA test operates at the molecular level. If it rise and keeps rising after treatment, the only question is where, not if, the Prostate Specific Antigen is being produced.

The difficulty for post-radiation patients lies in the continued presence of the prostate. That's when imaging studies may come into play.

Game plan in that case: follow the PSA frequently (every 3-6 months). If it keeps rising, investigate further with imaging.

Using the PSA to initially diagnose cancer, and using it to follow progress after treatment are two different ball games. Do not neglect it!

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Thanks @trusam1
No question about following PSA levels post radiation and ADT. I am a big fan of preventative medicine, testing and avoiding drugs. Prior to starting Orgovyx (4 months) and Flomax, my systems had been free of any pharmaceuticals for many years, unless you count grape byproducts.

I had consulted a couple well published ROs on how to best monitor post treatment biochemical recurrence and actually found the comment from @wrothrock more insightful. He mentioned the differentiation in reliability of pre and post treatment PSA reading as a metric for recurrence. I'm planning to review the link that he kindly provided for the PCRI. However, what I am still missing is research and reports that provide an in depth verification of what is likely the most important question that all of us have: do I still have any remaining cancer? There are some reports to be found questioning PSA reliability, post treatment, such as the UCLA study: https://www.uclahealth.org/news/psa-levels-after-treatment-may-not-be-reliable-predictor.

As someone nearing the end of treatments, my investigation continues.

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@seasuite

Thanks @trusam1
No question about following PSA levels post radiation and ADT. I am a big fan of preventative medicine, testing and avoiding drugs. Prior to starting Orgovyx (4 months) and Flomax, my systems had been free of any pharmaceuticals for many years, unless you count grape byproducts.

I had consulted a couple well published ROs on how to best monitor post treatment biochemical recurrence and actually found the comment from @wrothrock more insightful. He mentioned the differentiation in reliability of pre and post treatment PSA reading as a metric for recurrence. I'm planning to review the link that he kindly provided for the PCRI. However, what I am still missing is research and reports that provide an in depth verification of what is likely the most important question that all of us have: do I still have any remaining cancer? There are some reports to be found questioning PSA reliability, post treatment, such as the UCLA study: https://www.uclahealth.org/news/psa-levels-after-treatment-may-not-be-reliable-predictor.

As someone nearing the end of treatments, my investigation continues.

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