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.

I think you are over reacting a bit- you are seeing a very small uptick in PSA. ANd that could be caused by many things other than PC recurrence...I am not a doctor nor expert on PC and PSA implications..BUT that is a very fractional uptick in PSA. I wou;d defer to you doctor and get his opinion. I would bet he says the same thing..relax...now if you have steady up tick over 4-6 months, then perhaps a scan is in order.

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It's BCR, in my opinion. I've been oscillating (monthly tests) between 0.08 & 0.11 for a year, but my last two are 0.12 & 0.14. It's definitely climbing, & I will have a PET scan WHEN (not IF, as I had hoped) it reaches 0.20 (my oncologist's limit).

At that point I can choose (depending on location): radiation, surgery, or go back on ADT/ARPI (which I tolerated well).

That's life in our new world.

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If he had a prostatectomy then .2 PSA is when they want to do salvage radiation. You spent a lot of time considering having adjunct radiation instead of waiting for salvage radiation. You still have time to wait. Your doctor may want to start doing something at .1 because of the advanced case, or he may not.

It has almost doubled in five months. The doubling rate is the important thing doctors look at. At that rate, you could have a couple more years before it hits .2.

What I’m saying is, It’s too early to worry. You can contact the doctor, but he probably isn’t going to want to do anything yet. The next PSA test is the one you need to be more concerned with, and it might just go down.

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Profile picture for xahnegrey40 @xahnegrey40

I think you are over reacting a bit- you are seeing a very small uptick in PSA. ANd that could be caused by many things other than PC recurrence...I am not a doctor nor expert on PC and PSA implications..BUT that is a very fractional uptick in PSA. I wou;d defer to you doctor and get his opinion. I would bet he says the same thing..relax...now if you have steady up tick over 4-6 months, then perhaps a scan is in order.

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@xahnegrey40

Still waiting for doctor's reply .
Nurse sent message that we need to do test again next month since it is climbing. We do tests every month anyways (on our own dime) - we were supposed to do test every 3 mos, but since that long span made me nervous I decided that we should test uPSA every month.
Thanks for words of comfort.

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Profile picture for jeff Marchi @jeffmarc

If he had a prostatectomy then .2 PSA is when they want to do salvage radiation. You spent a lot of time considering having adjunct radiation instead of waiting for salvage radiation. You still have time to wait. Your doctor may want to start doing something at .1 because of the advanced case, or he may not.

It has almost doubled in five months. The doubling rate is the important thing doctors look at. At that rate, you could have a couple more years before it hits .2.

What I’m saying is, It’s too early to worry. You can contact the doctor, but he probably isn’t going to want to do anything yet. The next PSA test is the one you need to be more concerned with, and it might just go down.

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@jeffmarc

Thanks Jeff < 3

Hopefully it will go down next month /\ (*knock the wood)

Yes, when we had consult with MO about adjuvant, he told us that he should wait and see if PSA climbs, and if it ever does that he suggest we start RT at PSA 0.1 since my husband has aggressive cancer.

Those 6 mos gave us at least time for complete healing (no incontinence), so we shall see what his RP doctors says.

I am so glad that we insisted on meeting RT and MO immediately post op since now we are in their system and all appointments will be easily made and arranged if needed.

Thanks again for encouraging words.

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Profile picture for Read & learn & live! @readandlearn

It's BCR, in my opinion. I've been oscillating (monthly tests) between 0.08 & 0.11 for a year, but my last two are 0.12 & 0.14. It's definitely climbing, & I will have a PET scan WHEN (not IF, as I had hoped) it reaches 0.20 (my oncologist's limit).

At that point I can choose (depending on location): radiation, surgery, or go back on ADT/ARPI (which I tolerated well).

That's life in our new world.

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@readandlearn

Thanks for sharing your experience < 3.
I will keep all that in mind.

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Profile picture for surftohealth88 @surftohealth88

@readandlearn

Thanks for sharing your experience < 3.
I will keep all that in mind.

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@surftohealth88 It’s horrible, the waiting, the anxiety, and then either the thrill of victory or the agony of defeat…totally sucks!
But, you are still dealing with minute amounts of PSA and you really can’t do anything just yet.
You know a scan probably won’t show anything - even at the magical 0.2 level, so all you can do is watch the PSA velocity and see if it continues to rise.
You may have many more months before it even gets to 0.1 - IF! - so hubby continues to heal and function better while monitoring.
Sloan-Kettering will only say PSA< 0.05 - nothing below that even concerns them (OK, yeah, it would concern ME!)
But you already knew going in all the negative factors present in your mate’s surgical pathology report and you were prepared for eventual BCR. So you planned well, and have your Plan B ready to go.
The issue is totally an emotional one: you had your game face on for months - fiercely researching, getting different opinions, figuring out all the angles…after the surgery you exhaled a big sigh of relief and felt GOOD for the first time in many months - the nightmare was almost over?🤞🤞
And now the f***ing PSA rears its ugly head once again and you are back in the quagmire of who, how, when and what…how can you not want to scream??!!
It’s almost impossible to relax, I know, but you cannot - CANNOT - control this; you will make yourself sick if you think you can.
What worked for me was acceptance of my situation: My PSA was climbing, test after test, and I was in BCR. I knew I would need radiation and ADT so why wish that I wouldn’t? It served no purpose.
With your husband’s history I would prepare, at least, for adjuvant/salvage treatment and start meeting some of the docs who might be involved in treatment.
This will give you what you need and what you do best - the opportunity to do something constructive and meaningful instead of simply waiting anxiously and being miserable.
You’re gonna get thru this!!💪
Phil

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Hey surf. Worry does absolutely nothing but rent space in your head. I've found it useful to replace worry with anger. I just get plain pissed off at the disease. Every hot flash, every joint ache stokes that anger. I think of how to kill more of it and imagine little cancer cells with cowboy hats falling dead off their horses (yea, I watch a lot of westerns). We have zero control over test results. We have 100% control over how we feel when they are posted. If my PSA results next week start with "0" after the period, I would be delighted. If it goes up, then the Drs have to kill more of it. Hang in there.

PS...picture looks just like my cat after she fell in the toilet 😁

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All it really means right now is that you've crossed the undetectable/detectable line. So if there is an area of lucency on the next scan, they'll dig a little deeper to make sure it's not very rare neuroendocrine prostate cancer (NEPC), which can develop while expressing only small amounts of PSA.

But frankly, that will just be due diligence on their part: with PSA still so far under 0.2 (much less 2.0), anything that shows up on the next scan will probably end up being benign "noise".

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It sure I have much to add to the invaluable comments others have made.

As others have pointed out, some institutions do not use USPSA, Mayo being one.

I've asked this question before, just because we can measure 2-3 decimal places, what do we do with the results?

I've used the sandbags of driving on I70 in western Colorado on my way out to go skiing. Far, far, off in the distance I can see the headlight of a train. The question, will it's route impact me, if so, it's the old algebra question, vehicle X moving one direction at X speed and vehicle Y moving in the opposite direction at Z speed, when do they meet?

PSA kinetics may give you that answer, doubling and velocity times.

Estimating that could then drive the discussion, at what PSA do we image and with what? Intuitive and statistically we know that at >.2, there is an out a 1/3 chance imaging shows activity, between .5-1, that doubles.

Of course, if you're considering adjuvant or salvage therapy then waiting until .5-1 is not a feasible decision!

Generally, imaging should inform a treatment decision. A question to discuss with his medical team is if imaging is negative, what then?

That answer may lie in discussions with his medical team about treatment options.

If his desire is to avoid systemic therapy or delay it, then MDT may do that. That MDT could be to a location(s) identified in imaging. It could also be the traditional SRT to the prostate bed only (would not be my choice), you could discuss including the whole pelvic lymph node system as he is high risk. Of course, doing SRT and including the pelvic lymph node system is not "MDT."

If the decision is to do SRT then the decision shifts to whether to include systemic therapy, 6-24 months, which agent and whether to include an ARI, again, which one?

If the discussion focuses on systemic therapy, doublet or triplet therapy then which agents, how long...keep in mind that chemotherapy may work best for high volume metastatic PCa. Also, high risk patients are generally on the 24 month end of that systemic therapy, some say 36 months...

It would be nice to have a black and white checklist for treatment, if this, then that! The NCCN and AUA guidelines endeavor to do that but even they give "choices...!"

Were I you, what would I do?

Adjuvant therapy would certainly be at the top of my list to discuss. That discussion would include SRT to the prostate bed and pelvic lymph nodes along with 18-24 months of systemic therapy, ADT - Orgovyx and an ARI - Nubequa. That discussion would include de-escalation, if my PSA drops to "undetectable" in the first six months, aka, a rapid responder, do we then come off treatment and actively monitor.

In your discussions with his medical team I would give weight to PFS and RPFS vice OS. The latter is just too hard to determine with any degree of relevance given the changes in the treatment paradigms brought about by research, the PATCH trial and use of E2. The EMBARK trial with ARI mono therapy and de-escalation ...

Then there is this ... https://ancan.us14.list-manage.com/track/click

Keep the forum informed of your discussions, your medical team's recommendation and decisions!

Kevin

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