Bahhhhhh, uPSA going up : / ...

Posted by surftohealth88 @surftohealth88, Mar 10 6:05pm

I feel like puking, but maybe later, let me first vent my fear here *sigh

We had monthly uPSA since October, and it was always 0.014, or < 0.015 and than last month it came 0.018 and I tried not to panic (hardly successful in my case) . I was hoping it was just a glitch and that my husband was probably dehydrated and he was skiing the whole day before etc etc, but result came today :
uPSA = 0.026

ARGHHHHH !!! Somebody just shoot me : (((

Luckily my husband, as always, is much calmer then me and he just sent a question to his RP doctor and we are waiting for the comment.

I read some articles where doubling time for uPSA does not have the same implication as levels of regular PSA ( like 0.014 going to 0.028 does not have the same weight as 0.1 going to 0.2 and that is the only straw I am now "hugging". : (((((((

I mean, with such aggressive cancer not having a BCR at some point would be a miracle , I just hoped for a year or two of some respite, but nope : / ... Oh well...

If you had uPSA that was slowly rising - what did your doctor say ? At what point it really is considered a definite BCR ?

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

High surf to health, I think our paths are going to continue to cross for quite a while I'm a year out of Arp.And now , my undetectable p s a is detectable , not what I wanted , let's keep hanging in there and supporting each other. Ed in Maryland

REPLY

I agree about the anxiety risk of the ultrasensitive PSA test, but still, it has its benefits.

Last fall, scans showed a lucency in my spine at T3, the former cancer spot (obscured by screws and cement holding my spine together, which would also prevent a biopsy).

If my PSA had been undetectable just on the regular test (< 0.10), there would have been a very, very small chance of NEPC, so we might have ended up giving it a cautionary zap of radiation just to be safe But with my PSA undetectable on the ultrasensitive test (< 0.01), we were pretty confident it couldn't be even NEPC.

In the event, by adding the head camera for follow-up MRI in January and shooting downwards around the hardware (??not quite sure how that works), they were able to confirm that it's just benign bone remodeling. But if they hadn't, there's a chance I might eventually have ended up with an unnecessary session of radiation.

I'm a special case, but the uPSA test adds an extra layer of confidence when deciding whether a new lucency on a scan might matter.

REPLY
Profile picture for melvinw @melvinw

@surftohealth88

Glad to share my post RP pathology. I keep it handy. Btw, my highest PSA prior to the RARP was 5.2. My PSA had been rising for several years with an extremely linear velocity (see attached plot).
---
AJCC Pathologic Stage: pT2c pN0 pM
Adenocarcinoma, acinar type
Gleason 3 + 4
6% of prostate involved by tumor
No EPE
No seminal vesicle invasion
No lympathic/vascular invasion
Perineural invasion: present

*Positive margin on right apex*

Right dominant tumor with minimal left side involvement.

*Prolaris Score 1.7 with 53% probability of BCR in ten years*
——

Despite my 3+4 Gleason score, the positive margin and Prolaris Score were concerning for recurrence. Post-RP, I did quarterly PSA testing for two years, then semi-annual testing for three years, then annual testing for five years. Always had a DRE with each PSA test.

The good news in all this is that my recurrence came ten years later, and when it did, my PSA was barely over the limit of detection (0.1).

I will add that on the PSMA PET scan from last June, the palpable nodule in my fossa had an SUVmax of 13.3. I agree with my urologist and RO that PSA is a much more robust biomarker with decades of science backing it up than any reading of uptake intensity on a PSMA PET scan. The scan provided strong evidence that the nodule is indeed a cancerous lesion/local recurrence. The PSA scores are more telling of the aggressiveness of the cancer.

And yes, despite my sub 0.5 PSA, the PSMA PET scan detected the recurrence. And insurance did provide coverage.

Back in 2014, when I was first diagnosed with PCa, I recall telling my wife and friends, “It’s all just a numbers game with probability tables until you hear the words, “You have cancer”. Then, the numbers are still the numbers, but your emotional reality changes.”

As a career scientist, I tend to stayed focused on what hard data are telling me (and what they aren’t telling me), but the data are only part of the reality of living with cancer. Your post was a powerful reminder of that. Thanks for sharing and bringing that fuller reality to the forefront of my consciousness. I am sure that I am not the only nudged by your post.

Hope the nausea has settled today.

Jump to this post

@melvinw

Thanks so much Melvin for additional information < 3

If it can make you feel any better I think that you have very special guardian angel ; ) who made sure that all is discovered on time against all odds and treated with great success ; ) !!!! *knock the wood

They found a nodule and knew exactly where to treat and as a result cancer was zapped and obliterated once and for all : ))) The only place where you had positive margin was at the apex and it is actually part that is lowest on a gland and closest to rectum and muscles there, so I am sure that nodule was the last remnant and is now eliminated forever *puffff : ))) !
Cheers to that ! : )

REPLY
Profile picture for edinmaryland @edinmaryland

High surf to health, I think our paths are going to continue to cross for quite a while I'm a year out of Arp.And now , my undetectable p s a is detectable , not what I wanted , let's keep hanging in there and supporting each other. Ed in Maryland

Jump to this post

@edinmaryland

Ed, I am sooo sorry to hear that : (((. What are your numbers now ? I will be there for you, of course : ) ! We will endure this, whatever comes , same as we endured surgery - you will see < 3.

REPLY
Profile picture for northoftheborder @northoftheborder

I agree about the anxiety risk of the ultrasensitive PSA test, but still, it has its benefits.

Last fall, scans showed a lucency in my spine at T3, the former cancer spot (obscured by screws and cement holding my spine together, which would also prevent a biopsy).

If my PSA had been undetectable just on the regular test (< 0.10), there would have been a very, very small chance of NEPC, so we might have ended up giving it a cautionary zap of radiation just to be safe But with my PSA undetectable on the ultrasensitive test (< 0.01), we were pretty confident it couldn't be even NEPC.

In the event, by adding the head camera for follow-up MRI in January and shooting downwards around the hardware (??not quite sure how that works), they were able to confirm that it's just benign bone remodeling. But if they hadn't, there's a chance I might eventually have ended up with an unnecessary session of radiation.

I'm a special case, but the uPSA test adds an extra layer of confidence when deciding whether a new lucency on a scan might matter.

Jump to this post

@northoftheborder

Oh yes, by all means, dear NorthStar : ))). The more data we have the better ! For such aggressive cancer as is my husband's , uPSA is necessary. It could be false alarm but we can not have it both ways ; ), either we wish to know early or not ! My poor husband always got all of his tests and results very late, and nothing compares to that awful feeling - the feeling that "if we just caught this on time, all will be different now" : (((...

REPLY
Profile picture for northoftheborder @northoftheborder

I agree about the anxiety risk of the ultrasensitive PSA test, but still, it has its benefits.

Last fall, scans showed a lucency in my spine at T3, the former cancer spot (obscured by screws and cement holding my spine together, which would also prevent a biopsy).

If my PSA had been undetectable just on the regular test (< 0.10), there would have been a very, very small chance of NEPC, so we might have ended up giving it a cautionary zap of radiation just to be safe But with my PSA undetectable on the ultrasensitive test (< 0.01), we were pretty confident it couldn't be even NEPC.

In the event, by adding the head camera for follow-up MRI in January and shooting downwards around the hardware (??not quite sure how that works), they were able to confirm that it's just benign bone remodeling. But if they hadn't, there's a chance I might eventually have ended up with an unnecessary session of radiation.

I'm a special case, but the uPSA test adds an extra layer of confidence when deciding whether a new lucency on a scan might matter.

Jump to this post

@northoftheborder Yes, I agree about the benefits. I’m sticking with the usPSA test from here forward, and will just deal with the psychological fallout. Just another thing to learn to roll with. It helps to recognize that the anxiety exists, rather just bury it or maintain some sort of stoical facade. I have to remind myself of that from time to time.

And once again, everyone’s experience with PCa has unique attributes. We share our stories and glean what we can from the sum of it all to help weigh risks and benefits in our individual situations. Your story may be a special case, but it is extremely instructive. You made very smart and discerning use of the usPSA test.

REPLY
Profile picture for surftohealth88 @surftohealth88

@melvinw

Thanks so much Melvin for additional information < 3

If it can make you feel any better I think that you have very special guardian angel ; ) who made sure that all is discovered on time against all odds and treated with great success ; ) !!!! *knock the wood

They found a nodule and knew exactly where to treat and as a result cancer was zapped and obliterated once and for all : ))) The only place where you had positive margin was at the apex and it is actually part that is lowest on a gland and closest to rectum and muscles there, so I am sure that nodule was the last remnant and is now eliminated forever *puffff : ))) !
Cheers to that ! : )

Jump to this post

@surftohealth88 Thanks for all those positive thoughts! That is the best of all worlds moving forward, and a plausible one at that.

Yes, in a weird way, if I was destined for a relapse, then I am grateful that it came in the form of a distinct and slow growing nodule as opposed to a generic BCR. Precision targeting rather than carpet bombing!

And I am grateful for my old school (and highly regarded) urologist who kept up with the DREs. I know a lot of guys get pretty anxious and uncomfortable with those particular probes. I get it, but the DREs never really bothered me. I would take a 100 DREs over another total knee replacement any day.

REPLY
Profile picture for surftohealth88 @surftohealth88

@edinmaryland

Ed, I am sooo sorry to hear that : (((. What are your numbers now ? I will be there for you, of course : ) ! We will endure this, whatever comes , same as we endured surgery - you will see < 3.

Jump to this post

@surftohealth88
went from four tests- same lab- undetectable to recently detectable 0.014 (same lab)
not what I wanted on top of abscessed (infected) lymphocele ( after RARP) and lymphedema
As I am learning about this, radiation can make the lymphedema and lymphocele worse yet for the BCR salvage radiation may be on the table. I have no idea where this will lead. I will see my urologist NP this week. But as of now, I will also seek additional opinions

REPLY

thanks for staying on the list Surf to Health

REPLY
Profile picture for edinmaryland @edinmaryland

@surftohealth88
went from four tests- same lab- undetectable to recently detectable 0.014 (same lab)
not what I wanted on top of abscessed (infected) lymphocele ( after RARP) and lymphedema
As I am learning about this, radiation can make the lymphedema and lymphocele worse yet for the BCR salvage radiation may be on the table. I have no idea where this will lead. I will see my urologist NP this week. But as of now, I will also seek additional opinions

Jump to this post

@edinmaryland

Ed, I was thinking - since you have so much inflammation and infection going on in that area, the tiny rise in uPSA might as well be just a result of all those processes that are going on. It is known fact that inflammation or infection in general can cause PSA increase even after RP. It is actually great possibility that that is the case *knock the wood, and I know that it is unnerving never the less but try to think about that possibility too < 3

REPLY
Please sign in or register to post a reply.