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PSA frequency

HarGreg profile image
26 Replies

Good morning to all. I have received the most invaluable information from this site! Thank you! I am updating my bio and one question that I would ask your opinion on. I had a prostatectomy in June of 2020. 18 months of undetectable psa. When it reached 0.31 in November of 2022 I had PBRT luckily with no side effects. My psa post radiation is undetectable <0.01. My last visit with my urologist was in September 2024. He told me follow up in one year for PSA test and appointment. My question is, should I wait one year for a PSA test? Thank you

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HarGreg
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26 Replies
Atdabeach profile image
Atdabeach

I don't know that there's a "right" answer, just whatever suits your peace of mind. Personally, I couldn't wait a year to see if something's changed. I'm in followup mode after 44 sessions of proton radiation and 2 years of ADT (undetectable for over 2 years now), and when my RO recommended testing every 6 months, I said how about 3, and he said sure, why not?

If and when this beast wakes back up, I want to know, pronto!

NanoMRI profile image
NanoMRI

If one's next treatment plan is ADT, testing frequency may well be less important. After 26 months of <0.010 my < dropped. Because I choose to test every 1-2 months I knew straight away. I have learned to not give cancer time and obscurity. All the best!

Justfor_ profile image
Justfor_

Definitely NO. In your shoes I would followed an adaptive schedule as follows: Next test in three months from latest. While <0.01 add a month each time like 4, 5, etc. Rising PSA subtract one month from that last <0.01 reading.

Tall_Allen profile image
Tall_Allen

At least 3 months.

HarGreg profile image
HarGreg in reply toTall_Allen

I was being tested every 6 months, don't know why this urologist would want to now test yearly? My former urologist retired and I started with Dr. Grafstein who has basically done follow up. I think I will start the 3 month testing and fine a new urologist. Hopefully I will stay undetectable for a very long time. I will start testing every 3 months. How long should I continue with the 3 month schedule if I’m undetectable? Thank you, Harlow

Tall_Allen profile image
Tall_Allen in reply toHarGreg

The first post-PBRT should be 3 months. If undetectable after a year, you can go to every 6 months. If still undetectable after a year, you can go to annual. I recommend conventional PSA test (undetectable=<0.1), not ultrasensitive.

HarGreg profile image
HarGreg in reply toTall_Allen

Thank you TA. I will have the last 6 month PSA test in March of 2025. This we’ll give me 2 years, 3 months undetectable and then annually after this. Maybe my urologist wasn’t that far off at my September visit when he said yearly testing. Thanks again, Harlow

spencoid2 profile image
spencoid2

I also would find it very difficult to wait a year. But my last PSA was 500 and Pluvicto does not seem to be lowering it as I had hoped. Even though getting another PSA test before my next Pluvicto probably will not provide any real meaningful information that will change treatment planning, I just want to get the fucking number so I can feel sorry for myself :) Or maybe have a pleasant surprise.

And if you do have a test sooner, try to not get too anxious if it is not what you had hoped for. Get another one in a month or three and see if there is a trend before freaking out.

Lettuce231 profile image
Lettuce231

I am one of those people that needs to know, I have a PSA test every 3 months, any longer and I would be concerned, you need to know what's going on with your body and this is your sole indicator.

All the best.

Lettuce231 profile image
Lettuce231

Hi, if your happy with the new urologist, just request him for more frequent testing. I doubt he will refuse, I was having monthly ones at the beginning. All the best 👍

HarGreg profile image
HarGreg in reply toLettuce231

Thank you

lowT163 profile image
lowT163

get it when you want?

HarGreg profile image
HarGreg in reply tolowT163

Thank you, That’s what I plan to do! Harlow

Diverguy profile image
Diverguy in reply toHarGreg

Great gives you confidence. Best wishes

Diverguy profile image
Diverguy

do the test every 3months and send the results to your doctor. Great peace of mind

j-o-h-n profile image
j-o-h-n

PBRT = proton beam radiation therapy - hate abbv). Check your PSA whenever your anxiousness battery is at full strength and this will automatically deplete your battery till it fully re-charges for your next test.

Good Luck, Good Health and Good Humor.

j-o-h-n

HarGreg profile image
HarGreg in reply toj-o-h-n

Thank you John, Harlow

Lewis22 profile image
Lewis22

My PSA has been undetectable since January 2022 following salvage radiotherapy. In April 2024, I was given the opportunity to move from 6 monthly testing to annual testing. I was also informed that if PSA was undetectable after 5 years, the hospital would discharge me to my GP. I live in the UK and all treatment has been under the National Health Service. I believe medical history may be relevant regarding testing frequency. For example, Gleason staging, HT response and PSA history prior to and after surgery and salvage RT. However, testing frequency is a personal decision unless advised for specific medical reasons.

HarGreg profile image
HarGreg in reply toLewis22

Thank you for the info. Have a nice evening. Harlow

spencoid2 profile image
spencoid2

I wouldn't jump t a new urologist unless there are reasons to do so. Good ones are unfortunately quite rare.

dans_journey profile image
dans_journey

I would encourage more frequent testing until a trend is established. My post-IMRT salvage radiation therapy nadir was 0.11 ng/mL and then it started climbing again from there. It's tripled in the last 12 months.

05/09/23 0.11

10/31/23 0.21

12/06/23 0.33

01/19/24 0.37

05/01/24 0.52

10/22/24 0.69

Good luck.

HarGreg profile image
HarGreg in reply todans_journey

Thank you for the reply. All the information on this site helps me form a better understanding. Harlow

Jeremiad53 profile image
Jeremiad53

I would ask for the blood draw and test, do the draw at your local clinic, and CC the results to your Oncologist team. Every three months, it is worth the peace of mind.

Lost_Sheep profile image
Lost_Sheep

I would go crazy between tests if I had to wait months. Of course, before starting ADT my cancer after prostatectomy had a doubling rate of three months which quickly accelerated to two months before starting ADT. So there is that alarm bell ringing loudly.

I have been blessed with weekly PSA and hormone testing and monthly testing of Comprehensive Metabolic Panel and Complete Blood Count. I am an “unblind clinical trial of one” for comparing Standard of Care Orgovyx with off-label high-dose estradiol (E2). Checking organ function with the CMC and CBC tests was a condition of me using E2 because of my oncologist's concern about cardio-vascular effects.

(I seem to be doing quite well; PSA on E2 alone dropped 70% in 12 weeks after stopping the Orgovyx. I am down to PSA 0.014 ng/ml.)

It has given me a wealth of data to adjust the E2 dosing level and hopefully will provide support for my oncologist to go off-label with my treatment. (I am currently "against medical advice" with using E2 and vacation from Orgovyx).

A prominent researcher at a major cancer center with whom I had a consult told me that once-a-week testing was ‘WAY overkill (outside of a clinical trial setting) and once a month would be plenty for my case.

Cyclingrealtor profile image
Cyclingrealtor

It's a personal choice. My personal choice would be a, hell no not a year!

But I do have a bias because of the misinformation regarding my care and treatment.

I personally use a uPSA (.xxx) to keep a closer eye on any cancer activity.

We can dispute the < .1 vs < .01 all we want but most docs won't make a recommendation at this point of time when you're < .1.

The benefit of uPSA is that it allows you time to research the latest updates on treatment that may or may not be offered through your care team and peace of mind.

If offered a do-over, I would do everything to avoid leuprolide and the plethora of drugs that have significant side effects and impacts of quality of life issues. In my case, a late diagnosis did not offer me that opportunity so I had to start swinging from the start. Within 12 months of diagnosis it was RP, EBRT and leuprolide.

HarGreg profile image
HarGreg in reply toCyclingrealtor

Thank you for the reply! So much good info from members on this site. Harlow

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