Looking for anyone or anyone that kno... - Prostate Cancer N...

Prostate Cancer Network
2,572 members1,351 posts

Looking for anyone or anyone that knows someone with a post RP low but measurable uPSA level?

jronne
jronne

Looking to engage with anyone or anyone that knows someone that has been or is in my situation

I am 4 years post RP with two years of rising uPSA from <0.006 to 0.012.

17 Replies
oldestnewest

Radical Prostatectomy 2014, Radiation 2016, PSA Nadir 2016, 0.02, 12/2019, 0.09.

Your numbers are still very low so some significant action at this point in time might be premature.

Seeing as you have seen a slight rise in the PSA, increased awareness and ongoing surveillance is in order.

The doubling time is what many point to as a marker for action.

Another factor to consider - you are nearer to the zero end of the scale that the instrument measures - therefore, the accuracy is within a margin of error that can't be trusted without additional readings to support an increasing count. What if the margin of error is 1 % ?

Although this might not relate to you specifically, I've read of multiple cases where numbers bounce around a bit, often leading to undue stress.

My understanding is that might be more relevant for patients who received radiation treatments.

There are cases where the RP was not 100% successful with progression happening years after the fact. I know several individuals who experienced that, unfortunately. The good news is that those who did progress caught it quickly.

They are doing well today, managing the disease, chronically.

Time will tell, but at least you are monitoring the situation while trying to catch it as early as possible.

jronne
jronne in reply to RonnyBaby

This uPSA test if very accurate and reproducible at 0.01. It has a sensitivity of < 0.006.

the standard deviation of the test is +/- 0.001. The fluctuating uPSA level in the human body is bigger factor in my opinon along with supplements which I avoid 72 hours prior. Getting tested often removes this noise. Anyways my uPSA is rising slowly. I would like to meet anyone or anyone that knows anyone whose uPSA stalled forever post RP.

RonnyBaby
RonnyBaby in reply to jronne

Thanks for clearing that up for me.

My background included analytical laboratory work in scientific settings, so I guess the

accuracy and tolerances needed to be factored in. Seeing as this is not the case here, then you might be at the beginning of signs of a possible slow progression.

The good news is that you are monitoring what's up.

Hopefully, this possible slow progression might be well managed.

I certainly hope that you are doing well .....

jronne
jronne in reply to RonnyBaby

yes I do wonder if BCR is just a matter of when not if for me

just want to mentally prepare myself as the treatment options are all pretty bad (SRT sucks and does often work)

btw am a CalTech grad in physical chemistry, BS 3 years

RonnyBaby
RonnyBaby in reply to jronne

I recently read something that originated from this site about 'recurrance'.

It appears (statistically)that IF there was an RP and something got missed, BCR occurs within the first 2 years.

I was searching for some markers for myself, seeing as I was aggressively treated with radiation and ADT and perhaps 16 months of apalutamide (I was part of a clinical trial but quit due to SEs).

A good nadir, post- radiation is considered to be around 1.0.

BCR for me would be past 2.0.

I was fortunate to get to below '0' after treatment, then went on an ADT holiday, which I hope is permanent.

Statistically speaking, my BCR % is between 30 and 50 %, but the time line is beyond 2 years and could happen anytime past that point (assuming something significant wasn't missed during treatment).

I'll get my latest reading (PSA) in the next few days

Last one was + 0.20.

I expect it to rise (so does my MO).

Time will tell, but I wouldn't want to bet either way.

Some days I think I'm cured, then, I fell lousy and wonder IF.

A large part of my problem is chronic insomnia.

How can you heal well when you can't sleep and rest adequately ?

It crossed my mind on many occasions that insomnia set me up for cancer in the first place. Of course, there is no answer to that question.

Back to you - the 'micro'PSA test is a good diagnostic tool.

I hope that you are in a position to take advantage of possibly detecting it early.

At least for now, your numbers are still encouraging - some people never get close to the low levels you were able to reach.

jronne
jronne in reply to RonnyBaby

Hey best wishes, guys like you have and deserve my respect as your path is harder than mine regardless if I bcr or not

Thank for your story as I am just asking and then listening trying ton figure out if and when I need to act

RonnyBaby
RonnyBaby in reply to jronne

Consulting with others is a good thing.

Knowledge is power and the guesswork can basically be eliminated.

You're going in the right direction.

And my latest PSA reading is 0.54 - still rising slowly but surely.

My 'T' level is moving off the lowest point in the normal range, so I guess

the 2 numbers are tracking together.

Too early to tell if this is bad news but I'm below 2.0 which is my upper limit

(or so it is written).

That PSA is still incredibly low. No time to panic.

jronne
jronne in reply to Jeff85705

Not panicking just wondering if I have a realistic chance of avoiding BCR.

Anyways my uPSA is rising slowly for 28 months from < 0.006 to 0.012

The uPSA test is the way to go at least for me for this reason.

Once you cross 0.03 you will get BCR.

I would like to meet anyone or anyone that knows anyone whose uPSA stalled forever post RP.

Am on several forums and phone support groups and have yet to hear of anyone that this happened too.

My lab records anything under 0.10 ng/ml as undetectable. Variations as minute as yours may result from different labs or range of error. Actually my PSA has "stalled" at <0.10 ng/ml since surgery in February 2017.

jronne
jronne in reply to Jeff85705

I would be stalled to with a < 0.1 test. the early SRT treatment is at 0.03 for many guys. waiting until .1 worsens outcomes by 2. uPSA is cheap and painless as if you are < 0.006 you are in great shape

I want to know if things are going south and have some time to decide how and when to act

Leave it up to your doctor, hopefully your urologist. It's too soon to start worrying. If it goes above 0.1 ng/ml, then you need to get some recommendations from urologist or clinical oncologist, or, preferably, both. I believe labs use the "<0.1 ng/ml" as evidence of NON-recurrence, that is, "non-detectable." Worry about what is really important in life, not 0.001 level PSAs. That's my opinion.

jronne
jronne in reply to Jeff85705

My upsa is 0.01, is wish it were 0.001 because the test is < 0.006. Many guys are fat dumb and happy with a upsa of 0.005 which was me for 18 months

You seem to believe that BCR is a magic number and at a specific threshold, additional is always necessary to survive. That is not how this disease progresses.

The latest 2019 European (EUA) guidelines have now shifted from absolute value to risk groups (low and high). Not all BCR progress to clinical recurrences or cancer death.

Low-Risk BCR (PSA-DT > 1 year AND pathological ISUP grade < 4

High-Risk BCR (PSA-DT < 1 year OR pathological ISUP grade 4-5

The recommendation (with strong strength):

"Offer active surveillance and possibly delayed salvage radiotherapy (SRT) to patients with biochemical recurrence and classified as EAU low-risk group at relapse who may not benefit from intervention."

jronne
jronne in reply to Gemlin_

thx for the input, just collecting data and opinions

could you provide a link to the latest 2019 European (EUA) guidelines

my genomic health genetic decipher score is 0.22 which is lower risk if this means anything in these guidelines

Gemlin_
Gemlin_ in reply to jronne

uroweb.org/guideline/prosta...

Look in chapter 6.3. Management of PSA-only recurrence after treatment with curative intent

About Decipher and other genomic tests they are waiting for ongoing trials.

You may also like...