Post Prostatectomy 6 years. PSA <.01 until now. Anyone else?

@jeffmarc
Agree, I really like this forum and you folks have taught me a lot from your experiences and research.
I am not sold on AI, lots of people are, but I take it with skepticism. I know it's just a computer program witting by someone like me and uses algorithm saving and searching massive databases. Those algorithm designs can be wrong because they use weighted facts rather than factual understanding. Still AI is not a bad place to start researching. But I am old school and may not be adjusting, but that's okay.

@tom86

Yeah, as I say, if only there was a checklist, if this, then that...

Alas, there is not.

My radiologist says in the tumor review boards the oncologists are all over the map when defending their treatment plans.

As I say , put 100 prostate cancer medical specialists in a room , give them a set of clinical data and ask for consensus on treatment...good luck with that!

My first two treatments, surgery and SRT followed the SOC in the NCCN guidelines, so, they were "good" decisions, following the "science."

Both failed but all was not lost, I learned to take charge, amass clinical data and then make decisions that used he science as a foundation but then were hybrid, making choices that fit my clinical data, not population based.

It's working...almost at the 12-1/2 year mark, only three years on treatment!

@kujhawk1978 a
Congrats!
Certainly a full time job just managing to keep up with all the data, opinions, support groups etc. Not the way we planned life's journey, for sure. Like you say, live your life!! Tom

@tom86
There are only a few doctors that will wait until it shows up on the PSMA pet scan before they will do anything. That very seldom works since at that low PSA they’re usually isn’t anything seen on the pet scan.

I’m gonna include two different pieces of information one is from the American Society of clinical oncology that calls for salvage radiation at .2, Because it doesn’t work as well later. Another one talks about adjuvant radiation, Will you get it early because you have more than one characteristics Of aggressive prostate cancer. Maybe you can referred to both of these when talking to your doctor.

From Ascopubs about what PSA to do salvage radiation Following a prostatectomy.
≤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/
Adjuvant radiation
Dr. Efstathiou concluded as follows:b
* Early salvage radiotherapy is favored over adjuvant radiotherapy in most patients
* Consider adjuvant radiotherapy in otherwise fit, motivated, very high-risk patients with ≥2 of the following risk factors:
* pT3b-4
* Gleason score 8-10
* pN+ Lymph node Metz
* Decipher score >0.6
* In high-risk patients, use lower thresholds to initiate ‘ultra-early salvage or adjuvant-plus’ radiotherapy
* If giving adjuvant radiotherapy, it implies high-risk disease. Thus, Dr. Efstathiou would recommend treating the prostate bed and pelvic lymph nodes, in addition to short-term versus long-term ADT, depending on risk factors
* May consider genomic classifiers or artificial intelligence tools to help with informed decision-making
* The goal is to avoid (or delay) radiotherapy in those who we can, without missing a window to cure patients who are guaranteed to recur

Here is a link to the article supplied by @surftohealth88 originally
https://www.urotoday.com/conference-highlights/apccc-2024/151546-apccc-2024-debate-how-to-best-manage-a-fit-patient-with-high-risk-localised-and-locally-advanced-prostate-cancer-how-to-select-patients-for-adjuvant-therapy-after-radical-prostatectomy-and-how-to-treat-them.html

@melvinw
In 10 years my PSA has moved from <0.05 to as much as .1, five times. If it doesn't go back down in 3 months, i get to research new drugs. My PSA moved up from <0.05 to .5 on a July 21 test. On August 21, I get another PSA. No pressure!!!

That’s quite the anxiety roller coaster! Sheesh. Are you on ADT? Surgery or radiation?

That last jump from <0.05 to 0.5 sounds like something other than lab variance.

My next PSA is on August 21 too.

Hope your trend in not upward.

@tom86 You are correct that no salvage radiation was given. My RP was postponed by 6 months. All this happened at the beginning of the COVID closures. Surgeries were being done only on an emergency basis, and my surgery was not considered an emergency. Once I did get the surgery done, the "experts" felt, given the COVID and the closures, that salvage radiation was not necessary. I am now leaning toward getting some imaging done soon. A few months ago, my PSA was 0.09 - still a ways off from what is considered recurring. However, I now have no feeling in my right thigh and some very strange things happening to the right leg and foot. With the presentation of these new symptoms, doctors are now leaning toward the idea that they are a result of tumor growth in the pelvis and/or spine. We will see. Take care!

@tom86
It would be wonderful if somehow we could hear the multitude of success stories related to the Prostate Cancer process. Many are cured. Unfortunately; most people come to this site (and others) when the news is not so good or if people are feeling anxious. Guilty of that myself.

I had a radical prostatectomy about 2.5 years ago. I was a Gleason 9 prior to surgery and a 4+3 (7) after surgery. I had extra prostatic extension and was deemed T3a. My diagnosis was high risk poor prognosis. Here are my numbers:
6 weeks post surgery =<.04
3 months= <.04
6 months =.04
12 months =.06
15 months =.16
(Began going to Dana Faber from this point onward)
16 months=<.02 (3 weeks after that .16 result from the previous lab)
21 months=.02
24 months=<.02
Once I got to .16, I decided to go to Dana Faber in Boston to team up with a medical oncologist. Prior to that, I was at a major university medical center but only had a urologist who did the surgery.
I have received no additional treatment since my surgery. My medical oncologist believes that at some point I will need treatment. In fact, he was already cleared by my insurance up to June to get additional scans and such and we had already discussed our plan for radiation and adt.
Take what you can from my experience. From day 1, I considered this a chronic illness that will need life-long monitoring. I am mentally prepared for the worst and hope for the best. What I learned is that numbers fluctuate. When things look to be consistently going wrong, sometimes it changes back to the other direction.
I wish you well. Your number is low. It can definitely go back to previous results.

@gem112
Sincere thanks for sharing your experience. Fingers crossed as you go forward your fluctuations will remain low level. Attitude is so important. Best, Tom