Last PSA Number Before Cancer Diagnosis?

Posted by mikeg73 @mikeg73, Aug 23 10:27am

Would anyone mind sharing their last PSA number before they were diagnosed with prostate cancer?

It seems like PSA of 4.0 is the typical point where many are referred to Urologist. I'm wondering are most people getting diagnosed within the 4 - 10 PSA range.

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Profile picture for brownsf @brownsf

I was diagnosed in 2008 and had an RP (at UCSF) back then. My PSA initially after surgery was undetectable but started creeping up very slowly so, by 2022, it was above 0.2. I had 37 radiation treatments in 2023 (also at UCSF) plus 5 months of Orgovyx, about 2 years ago.

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Sounds like a positive story. I am just beginning the journey. How frequently was the radiation? How has your quality of life been?

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Profile picture for slick64 @slick64

It will be three years in September since I was diagnosed. My PCP had me go in for biopsy because my PSA was bouncing up and down for a couple of years. Needless to say what a shock. The last PSA before diagnosis was 8.
Later I was classed Gleason 4+3/7 intermediate.
I ended up having hi beam Proton radiation with 3 shots of ADT. Needless to say, I am having issues with the side effects from the hormone shots.
But at my last checkup, my surgeon informed me that I had the lowest PSA number ever of all the patients in the practice.

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@slick64
Great news you got.

I had proton radiation also but no hormore treatment. My PSA at 2.5 years was .10
It was originally at 3.75. But like you my PCP did not like climbing PSA numbers over the years and referred me to a urologist.

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Profile picture for itai @itai

Sounds like a positive story. I am just beginning the journey. How frequently was the radiation? How has your quality of life been?

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My radiation treatments were 5 days/week for about 8 weeks...and a lengthy commute. The commute was the worst part of the radiation, which is saying a good thing about the treatment. I would lie on the table for about 10 minutes and watch the devices orbit around me, get up and leave.

My quality of life is pretty good. The main side effect I've experienced is getting tired very easily, which could be from the Orgovyx (my Testosterone is still pretty low), or maybe just my age (80). I'm considering a Testosterone supplement but haven't decided.

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Profile picture for brownsf @brownsf

My radiation treatments were 5 days/week for about 8 weeks...and a lengthy commute. The commute was the worst part of the radiation, which is saying a good thing about the treatment. I would lie on the table for about 10 minutes and watch the devices orbit around me, get up and leave.

My quality of life is pretty good. The main side effect I've experienced is getting tired very easily, which could be from the Orgovyx (my Testosterone is still pretty low), or maybe just my age (80). I'm considering a Testosterone supplement but haven't decided.

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If you are on Orgovyx , it is reducing your testosterone close to zero. That causes fatigue for a lot of people, I know some that have had to stop it because their fatigue was so intense. That is quite unusual.

Adding testosterone is like feeding a gorilla. You have to be very careful, The whole reason you are on Orgovyx Is to reduce your testosterone so that the cancer does not grow and spread where it already is, and to other parts of your body. If you get off Orgovyx Then testosterone injections can increase your testosterone and reduce some of that fatigue. If you’ve been undetectable for quite a while, that can make sense. Speak to your doctor about this, Adding testosterone is not normally advisable for somebody with prostate cancer, Unless they have had a good time of undetectable PSA’s or trying to use BAT to Get ARSI drugs to start working again.

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Thanks...but I've done lots of research and am going slowly.

If I take a T supplement, it will be a topical gel which can be stopped easily. Several recent studies by major institutions have found little to no risk in taking a T supplement after prostate cancer hormone therapy. I've also talked to Urologists, an Endocrinologist, a Urology Oncologist, a Urology surgeon, an Internist and others. The consensus is that the risk is negligible and can be reduced further by frequent PSA monitoring and other tests so you can stop the T therapy if there are any indications--and that stopping if there's a PSA increase should cause the PSA to go back down. Of course, there are no absolute guarantees so I'm weighing the risk of T therapy, small as it is, against remaining so tired and listless.

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Profile picture for brownsf @brownsf

Thanks...but I've done lots of research and am going slowly.

If I take a T supplement, it will be a topical gel which can be stopped easily. Several recent studies by major institutions have found little to no risk in taking a T supplement after prostate cancer hormone therapy. I've also talked to Urologists, an Endocrinologist, a Urology Oncologist, a Urology surgeon, an Internist and others. The consensus is that the risk is negligible and can be reduced further by frequent PSA monitoring and other tests so you can stop the T therapy if there are any indications--and that stopping if there's a PSA increase should cause the PSA to go back down. Of course, there are no absolute guarantees so I'm weighing the risk of T therapy, small as it is, against remaining so tired and listless.

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It’s good To hear that you’re using a number of sources to make this decision.

Sounds like you will get your PSA tested monthly, good idea. It could jump quickly if this is a mistake.

Hopefully, you have been undetectable for at least six months and preferably a year, Makes the likelihood of it coming back strong, lower, and the likelyhood of mets growing limited.

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My PSA has been undetectable for over 2 years, The doctors I'm consulting are at two different premier research and teaching institutions. I remember the days when I used to sweat out every PSA test and my anxiety was off the charts awaiting the results. No way I want to go through that again. On the other hand, it would be nice to have some stamina.

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I went from 4.0 to 7.1

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6.1 ng/mL

However, a "cut off" value for "normal" is the wrong data to look at. The right data is "trending" values.

I have a 30 year trending data set. It very slowly was rising, then started bending up. Over the preceding three years, the PSA went from 2.8 to 6.1 ng/mL. Also, Percent "free" PSA , trending down, went from 25% to 16%.

I should have acted two years sooner but this happened during the height of COVID, and no one wanted people coming in.

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My PSA hit 4.8 when my PCP referred me to a urologist who performed a biopsy. Cancer in two cores, Gleason 6. Surveillance recommended. A few months later I went for a second opinion and a second biopsy. More cancer was found that was Gleason 7 (3+4). Now a candidate for treatment. Most significant to me (and the urologist) was my very linear PSA velocity from several years of testing (see attached plot). As the second urologist said, 'we can treat now, or wait, but I guarantee you will be back for treatment within a year'. I opted for a robotic radical prostatectomy with him ASAP. No regrets, although ten years later I now have recurrent cancer with PSA of 0.1 and a palpable lesion in the prostatic fossa, and no evidence of metastatic disease on PET or MRI scans. Starting EBRT of prostate bed and pelvic lymphs nodes in mid September.

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