Hi !
I thought that I could share some good news.
I’ve had my PSA result; 9 month PSA measurement after radiation (with ongoing Orgovyx and Abi) and it was < 0.1 again (in Sweden and Finland they don’t do ultrasensitive PSA).
Well, anyway I wanted to share good news with all fantastic members in this forum.
Best wishes - Ulf
Congratulations Brother!
Great news!! Congratulations and here's to many more!
Already said it directly but will say it publicly too.
Wonderful news and congratulations🎉.
We share testing dates, I got my results today as well (also < .1) !
Let me know your next test date, I'll schedule mine for then too 😉.
I plan to celebrate with 🍷. Sod dry January.
Congratulations, Ulf. I think Sweden and Finland are right to avoid uPSA tests.
Do not generalized Ulf. There is uPSA in Sweden. If interested contact user dadysgirl to find out where her father gets treated. It may be the Karolinska, but I may be wrong.
Hi Justfor_
With the public healthcare in Sweden, when you normally go to our district centres and hospital, the test is more generic country wide and then you normally don’t do any other tests then down to < 0.1 for PSA and for example also down to < 0.4 for Testosterone levels.
With that said, I’m sure that with a rather modern healthcare that we have in Sweden (and Finland) there are certainly labs in Sweden that have the capability of testing uPSA if needed.
But I have been treated in both Sweden and Finland and also been tested in Sweden and Finland and the standard is NOT uPSA. But perhaps you know better then me?
I just had another uPSA the other week at < .006 and I have been off of ADT since the end of June 2024.
There is 100% NO ISSUE with using uPSA as long as you understand the use of it and what it means.
I have a friend I just spoke with who switched from Kaiser Permanente over to Sutter Hospital and being that he is a prostatectomy patient Sutter uses .XX uPSA vs KP's standardized care and a .X PSA measurement. KP looks at uPSA as wasteful spending because there's no clinical interventions recommended below .1. But as a patient to self advocate and pick up on trends before that, uPSA is quite useful and a piece of mind having a better idea of what's going on inside.
Now wait for the dumb response of, "well that's such a small amount of cancer" and no one can tell you what your "small amount of cancer" really is nor where it is.
I am a supporter to self advocate what works best for you. NanoMRI has shown that with his self advocacy. If the experts had this dialed in, we wouldn't have to be such strong self advocates.
Some "experts" have told me that my cancer was just "bad luck"! I call bull💩 on that when we do not have an actual screening policy in place in the US. The USPSTF recommendation is just there as a grade C recommendation so the Industrialized Healthcare Complex doesn't have to recommend screening nor pay for it since their grade D recommendation has had such a horrible outcome, they have to save some level of face!
Well, good for you and it’s always nice to see people do well with this cancer beast.
So congratulations 😀
Hope that it’s still ok that I’m happy for my result
Likewise, congrats ulfhbg!
Here is the US it's a free-for-all with the various healthcare systems and medical organizations on who recommends what and when.
And we have the horrible United States Preventive Services Taks Force that's really not run by our government looking out for our best interest. The USPSTF are "volunteer experts" with ties directly to our Industrialized Healthcare Complex protecting their bottom lines.
And there are MAJOR discrepancies between the fee-for-service providers and the single-payer providers. It's a mess for sure!
Well, really sounds like it looking from the outside. Public healthcare have a lot of problems as well of course and especially with ’you need to offer and treat people the same way’. forgetting that cancer is very much on a individual basis and perhaps you need to have some flexibility on a individual basis.
But, like I said. It’s sometime difficult for anybody outside US to really understand how your healthcare works, because it seems to differ a lot, from state to state and perhaps also between hospitals.
Anyway, it’s nice to enjoy those small victories from time to time and it really helps the fighting sprit against this vicious beast were are fighting 👍😀
Fight on😃
That's what the Affordable Care Act here in the US was REALLY about...... changing the way healthcare is performed and migrating to a socialized healthcare approach under the bull💩 lines of "evidence-based medicine" and "value-based" healthcare.
While I am all for creating efficiencies in the Industrialized Healthcare Complex, it should NOT be at the cost of the quality of care and at the expense of patient outcomes.
The reason why I am a vocal advocate is because of the lies and manipulation behind the "evidence-based medicine" care models. Prostate cancer - there was NO overwhelming evidence that stopping screening like the USPSTF recommended was for the benefit of the patient. Moving early/low grade men to Active Surveillance would have been the appropriate move.
I have a friend who died a few months before her 52nd birthday because of a late diagnosis of colorectal cancer while other systems were screening at age 45, KP was screening at 50, she was a Kaiser Permanente member too.
Kaiser Permanente is HEAVILY involved in the movement of evidence-based medicine as their business model is a single-payer system (socialized medicine) so they have to have their healthcare system dialed in before they take on "preventive screenings" because they are an integrated healthcare system - insurance, hospitals, doctors, research, etc - they are everything so the dollar they get, that's all they get and they have to manage it quite well. Think of a "for-profit" socialized healthcare system where they standardize and ration care but at a slightly discounted "for-profit" rate.
Another friend was just diagnosed with metastatic cancer around her aorta and ureter. Kaiser Permanente had been treating her for almost 18 months for a kidney infection, so they said. She switched healthcare providers and got really sick one night and her husband took her to Sutter Hospital, her new provider, and she was diagnosed with her horrible diagnosis quickly through imaging. Sadly, the cancer was on the Kaiser Permanente imaging too and was ignored or missed.
I understand the term "socialized medicine" can be used pejoratively and is a polarizing subject, so I don't want to debate the pros and cons here. Instead, I’d like to share my experience in Belgium, where I currently reside (I’m originally from New Zealand but am a naturalized Belgian).
Here’s my timeline for prostate cancer diagnosis. These "days" are calendar days so the PET scans was just 1 month from initial consultation:
Day 0: Urology appointment in the morning, PSA results by the afternoon (with a call from the doctor the same day).
Day 2: mpMRI.
Day 8: Biopsy.
Day 10: CT scan.
Day 11: Bone scan.
Day 17–30: Consultations with a uro, surgeon, and RO.
Day 32: PET/PSMA scan.
In retrospect, I’m not sure if the CT and bone scans were strictly necessary, given that a PET scan was ultimately ordered (this decision came later).
I recognize that, in most cases, speed is not critical for prostate cancer. However, my case was T3b with intraductal/cribriform features (prone to metastasis), so I wanted treatment to begin as quickly as possible to minimize the risk of progression.
Belgium’s healthcare system operates on a universal insurance model, with non-profit insurers. This approach avoids the adversarial relationship often seen elsewhere, where insurers may benefit from denying claims. (For instance, I can't imagine anyone in Belgium treating a person who harmed a health insurance CEO as a "folk hero.")
While there’s usually a small co-pay, all cancer treatments are essentially free.
I’ve experienced healthcare systems in New Zealand, Australia, the UK, and Belgium as a citizen of each country. No system is perfect, and Belgium's system has its flaws, but overall, it’s quite good. It makes me proud to live in a country that prioritizes care for all its citizens.
Congratulation Ulf, very good news.
Ulf same here in Norway, no USPSA. Values under 0.1 reported as <0.1. in best case in Oslo private lab. reports PSA <0.05. I´ve got tested USPSA in Sept. in Prague (Unilabs) and in Dec. Gdansk (Alab) . Healthcare and all testing in Norway is almost free. However, since the cost of flights and tickets to these cities are so low I will continue taking USPSA (taking the morning flight and back in the afternoon). I am considering a PSA of 0.03 as the limit for BCR and concern.
Hi and Thanks 😀
Seems like you’re doing well yourself and that’s great 👍
I actually don’t think very much of regular PSA and uPSA but from reading posts here on this forum it’s really a hot topic. But for me not having to pay for it, for me it works fine
I had a post actually some time ago asking about it because I can see the value for people having done prostatectomy which of course takes out the major contribution of PSA. So without a prostate I for sure understand the possible benefit with uPSA
But for me with the prostate left, radiated really aggresive, being on Orgovyx and on Abiraterone I really can’t see the actual benefit and nobody actually tried to convince me of the use.
Anyway for me, I’m ok with the traditional PSA as most of us in Sweden (and Finland and Norway it seems 😉) especially also with < 0.1 which makes my finnish team at Docrates very happy as Well 😀
Fight on and good luck. And like you said, flights are fairly cheap and sounds like a good investing for your well being 😃
Congratulations! Count me as one who does not do USPSA. Some obviously feel it’s important for them and I understand it. I don’t have any investment in it myself, and I have reasons.
But that’s not why we’re here. We’re here to say great news and may it continue. I have had a lot of treatment, and completed it not knowing what to expect. It’s been nearly 4 years since then and now I’ve learned what to expect-nothing! I’ve had undetectable PSA the entire way, somewhat miraculously I think.
I may be cured, or it may return. As has been said, It’s a reckless, survival endowed, fecund disease. With some quality empathy I was able to get better skilled at the practice of not even thinking about it anymore.
Until the day of my quarterly PSA’s that is. I get a little nervous, then it passes before I even get the results. Weird, but It’s a great feeling. Great luck to you!
Well, congrats yourself of being ’cancer free’ one PSA test at the time 👍😀
You also seem to have done a extensive cancer treatment journey but with a goal of long term remission and potentially a ’functional Cure’ down the road, then you fight on 🫠
I really recognize the feeling when next 3-month is coming up, the stress, getting anxious and it’s really a strange way of living, in 3 month - circles 🤔🙂
Thanks for sharing 👍😀
congratulations and wish you many more.
awesome news..
Congrats! May you live long and prosper!
What is it about your treatment in Sweden that you didn’t like?
Congratulations on your hard earned success. This is an outcome that hopefully remains the same or even better for many decades pushing you into your 90’s or further why not go for a 100!
Just two days ago received my post seven weeks of radiation and three months into Orgovyx first PSA at .o1< Reading the great results you experienced and mine suggests all this fighting is worth the effort
Take care.
Great news Ulf!
Congratulations! Great to hear good news!
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