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.

Profile picture for surftohealth88 @surftohealth88

@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

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@surftohealth88
sometimes UTI (without symptoms) can be the cause too. My husband had it with his PSA incrrease before the RARP.

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Profile picture for surftohealth88 @surftohealth88

@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

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@surftohealth88 thanks so much surf to health. That would be wonderful if that turns out to be the case. And I' absolutely welcome it at this point.

I don't know what's going to happen, I'm just trying to hold on, and wait and see .

I know, I'm going to have to get another cat scan for what's going on with the abscess and everything, if the cancer has returned, then I just have to go to plan b. plan a was find the cancer and get rid of the prostate, I guess plan b is going to be find where the cancer went, if it went someplace and find a way to get rid of it if possible, I know that a lot of these cancers are slow, growing and all that, but I'm going to wait and see what the urology outfit I'm seeing says and then I'm going to go see a person that I think is one of the specialists Within 500 miles around here and get their opinion as well.
This last year was no walk in the park. I sure hope Round two is a little easier. Thanks. Ed

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Profile picture for edinmaryland @edinmaryland

@surftohealth88 thanks so much surf to health. That would be wonderful if that turns out to be the case. And I' absolutely welcome it at this point.

I don't know what's going to happen, I'm just trying to hold on, and wait and see .

I know, I'm going to have to get another cat scan for what's going on with the abscess and everything, if the cancer has returned, then I just have to go to plan b. plan a was find the cancer and get rid of the prostate, I guess plan b is going to be find where the cancer went, if it went someplace and find a way to get rid of it if possible, I know that a lot of these cancers are slow, growing and all that, but I'm going to wait and see what the urology outfit I'm seeing says and then I'm going to go see a person that I think is one of the specialists Within 500 miles around here and get their opinion as well.
This last year was no walk in the park. I sure hope Round two is a little easier. Thanks. Ed

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@edinmaryland
You want a really great oncologist in Maryland?

Bethesda Maryland
Sibley memorial hospital
Johns Hopkins, school of medicine
GU Oncologist
Dr. Channing Palmer

One of the best.

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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.

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@melvinw
That's pretty linear, but with a slight upturn. Do you have a logarithmic graph of that? I always graph my PSA logarithmically, but then I have much larger excursions (see my profile).

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Profile picture for jeff Marchi @jeffmarc

@edinmaryland
You want a really great oncologist in Maryland?

Bethesda Maryland
Sibley memorial hospital
Johns Hopkins, school of medicine
GU Oncologist
Dr. Channing Palmer

One of the best.

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@jeffmarc
Jeff thank you so much I was going to see Tom Jarret at Sibley ( also with Hopkins) However, he is with urology maybe it is time for me to switch to oncology.
I really appreciate it

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Profile picture for Read & learn & live! @readandlearn

@melvinw
That's pretty linear, but with a slight upturn. Do you have a logarithmic graph of that? I always graph my PSA logarithmically, but then I have much larger excursions (see my profile).

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@readandlearn

thanks Melvin
I checked out your profile. When did you have RARP? How long after did you start getting detectable PSA (is this the ten years you note in the profile) ? thanks very much
Ed

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Profile picture for surftohealth88 @surftohealth88

@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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@surftohealth88
That's not a picture of you hubby is it?

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Profile picture for Read & learn & live! @readandlearn

@melvinw
That's pretty linear, but with a slight upturn. Do you have a logarithmic graph of that? I always graph my PSA logarithmically, but then I have much larger excursions (see my profile).

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@readandlearn The data fit was so tight with a linear trend line that I never bothered with a log plot. Just tried that and the result wasn’t really any different. Either way, it was the unequivocal PSA velocity (combined with biopsy results) that convinced me to seek initial treatment (RARP) without delay.

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Profile picture for edinmaryland @edinmaryland

@jeffmarc
Jeff thank you so much I was going to see Tom Jarret at Sibley ( also with Hopkins) However, he is with urology maybe it is time for me to switch to oncology.
I really appreciate it

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@edinmaryland
If you have an advanced case that has come back or are a Gleason eight with aggressive issues, you should be seeing an oncologist, not a urologist. The urologist specializes in surgery, and early treatment by doing a biopsy, Beyond that you really want to have an oncologist on your team.

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Another reason this list has helped me. I may have had been a little one-dimensional just following urology around. I know some folks shift to oncology. Seems it is time for my shift ( or go to both)

I really appreciate it Jeff. After my visit this week, I will try to make an appointment with Dr Palmer. I am a Hopkins patient already so hopefully that will help me get an appointment sooner rather than later.

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