PSA Values, A Side Note

[6357axbz]

MD Anderson doesn’t measure anything below 0.1. I was reminded of this yesterday while speaking with my RO over the phone but have been told this by my MO there as well, in addition to seeing results of my blood work done there. My other primary lab uses a test that goes to the 3rd decimal place.

[Magnus1964]

PSA readings of less than 0.1 are insignificant. You need to be concerned trends. Three straight rises is a trend.

[Hidden]

University of Michigan cancer center uses the same method.

[DarkEnergy]

Makes sense, because lower PSA level movements would not trigger a treatment change.

[Tall_Allen]

There is no point to lower values if you are metastatic. The only time uPSA is useful is post-prostatectomy.

[flyguy in reply to Tall_Allen]

Not sure why lower PSA #'s have no point if you're metastatic. It's not the only indicator but isn't it an important one? Insurance will not pay for frequent scans so it seems all you have is psa for ongoing guidance. Forgive my Ignorance.

[Tall_Allen in reply to flyguy]

Because once you're metastatic, PSAs below 2.0 make no difference for treatment decisions.

[Chugach in reply to Tall_Allen]

I want that number at 0.000 and I want to hold it there forever. Science and treatments are changing fast, I’m not an oncologist but I’m a scientist. I’ve had these crazy swings from highs to lows to super high numbers to super low numbers. If PSA is an expression of cancer burden, then the lower the better. And if you can get to zero and hold it there then I understand that would be remission. I’m looking for the missing scale on the dragons belly- I want to slay this beast.

[julianc in reply to Tall_Allen]

Agreed. I wouldn't really want to wait until 0.1 before starting to consider options after RP. uPSA could help spot a trend before then.

[garyi]

I want world peace, the eradication of all cancer, and an end to ignorance and greed. Seems like we're both, unfortunately, destined for disappointment, Chugach.

[Chugach in reply to garyi]

Slaying the dragon is a high challenge and one that may not be reached by me but it is certainly not impossible. This is like the moon shot. When people put their brains and science and teamwork and dedication to a mission we can do it. We went to the moon 50 years ago with people calculating from slide rulers. There are IMMENSE challenges in achieving this goal, mostly from the money and politics and profit of the cancer industry. But those aren’t science barriers, they are human barriers. I’m 49 and I’ve been stage 4 for 5 years. My first MO said I’d live a year- wrong answer so I found a better and smarter and more progressive MO. I don’t have my head in the sand and im not pushing snake oil. I’ve taken most of the arrows in the quiver already running through the available SOC and clinical trials. But to hit the mark, the only way to do it is to keep learning, keep pushing science and know that we can achieve what we put our minds to. That’s called hope and it’s a very very powerful ally.

[Hidden in reply to garyi]

😂or just acceptance?

[Tall_Allen]

Well said, garyi. The "dragon" grows new scales all the time. Just keeping the dragon from having you for breakfast is a reasonable goal.

[Hidden in reply to Tall_Allen]

Although it tends to come back for lunch then dinner at some point. Greedy bastard!

[fluffyfur]

This is really good to know. We were 0.0 for 4 months after surgery and recently tested .1 at MDA. Trying to decide next steps.

[TJGuy in reply to fluffyfur]

I had RP at MDA, PSA was 2.3 at six weeks follow up. MDA cancelled salvage radiation since I was over 0.2

MDA put me on Lupron, first injection 4 months, MDA didn't want to look for my remaining cancer via scans. Then put me on Lupron for pallative care.

I went to MSK in NYC and MAYO Rochester MN for second opinions ( I would suggest you get one too). Both suggested I come off Lupron to be able to scan and locate the remaining cancer.

Both said I had chance of cure.

The Lupron was effective for me but interferes with scans so the single 4 month injection of Lupron prevented locating it in me for two years.

I settled on Dr Kwon at MAYO we scanned (PSMA, Choline, MRI) and located cancer still in my pelvic region.

Radiation was determined to be the next course of treatment. I was to receive that along with 2 years of Lupron.

I then started Lupron, and then three months later began PBLN IMRT radiation. (Similar to Spport clinical trial) (look that trial up)). I am six months in so far.

PSA rose to 3.9 to be able to locate cancer with scans, there were earlier unsuccessful attempts.

Then PSA was 0.1 prior to radiation due to Lupron effect.

I get my first three month post radiation PSA in 2 days. Then get rescanned in May 2020 to look for results from radiation.

[6357axbz in reply to TJGuy]

TJ, your profile gives no details but it sounds as if you had a dx of a curable cancer, i.e., local, if any metastases. Please correct me if I’m wrong. That being the case it’s a stretch to apply your treatments and outcomes to those of us diagnosed with distant bone metastatic, incurable PCa.

[TJGuy in reply to 6357axbz]

Actually I was told by MDA I had terminal prostate cancer with five to ten years life expectancy. Most likely seven years if I had good responses to Lupron and other meds, five if not . That I would die from it, I was told it must be throughout my system and "micro medastatic in my pelvic bones". Radiation was cancelled at MDA.

I was told "you have VERY aggressive cancer" "oh boy do you have aggressive cancer, you have the real macoy".

I had PSA of 24.1 while on finestide which means it was higher than that. I was Gleason 7. (4,3) with seminal vessel invasion and prostatic extension. T3Bn0m0.

It was devastating. After hearing all that I expected I be in for the lower end of the expectancy scale".

I still don't know what my outcome will be, a cure may be possible, some said I won't hit zero or no evidence of disease, some suggested I will but relapse years down the line, so.e said I'd likely be between 1 and 2 PSA but stable and perhaps decrease after two years, some said I'd in effect add in another five years additional life from the radiation. Its been said I have a 65% of no reoccurrence in 5 to 10 years. One said if you ask eighteen radiologist you'll get eighteen different answers.

So I guess what I wanted to share was get other opinions from other hospitals.

You should ask questions to see if the one you received your primary care at is now the best place to receive your advanced cancer care at.

PS The results of the Spport trial are encouraging

I wish all of us the best.

[Hidden in reply to TJGuy]

Unfortunately, It’s all palliative care once stage#4

[tallguy2]

I had micro-PSA ordered once (by the MO who administered my chemo). I don't see the value in this.

[Max135]

Axbz

After reviewing this post and the additional information I will make the change back to 0.0.

The additional time it takes my local medonc to get the ultra sensitive PSA back from the lab makes me crazy. My PSA is well above 1.0 and the .000 numbers have no value other then making me nuts. Thanks for the post!

Max

[j-o-h-n]

To the guy who invented the number zero, Thanks for nothing.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/10/2020 7:01 PM EST

[Hidden]

Kid nothing!