Question for everyone about your doctor ordering a PSA test. I would get annual blood work but it was never on my radar screen to get a PSA test included. My doctor for the first time in a decade ordered one last fall and it was determined after biopsy and PET scan that my gleason score was 8 and I had stage 4 cancer that had spread to the nearby lymph nodes. Not sure if I should be angry that a test was not run sooner so that the cancer could have been found before it metastasized. They classify it now as 4a and say no need to check PSA again for some time in order to let the drugs and radiation do their work. Would love to hear everyone's thoughts. Thanks.
PSA test frequency: Question for... - Advanced Prostate...
PSA test frequency
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dieselbeagle
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In response to your questions, and sort of it's water under the bridge now for me, but here's my original note on the subject of PSA testing, written two years ago but referring to my own PCa diagnosis 3 years ago. "Fortunately" for you, you are only 4A, not 4B 😃 (Many more people will read your note without commenting and may find the original post helpful.)
Also a few things to check:
1. You should have a baseline bone density scan. This is good in order to track your bone density which may be at risk.
2. It's a good idea, although therapy has already started, to get a testosterone blood serum test, also for baseline.
3. May I ask what kind of doctor(s) do you have? Urologist? Radiation oncologist? Medical oncologist? And of course your personal physician - the one who couldn't be bothered to do the PSA test? (You will want to have a personal physician if at all possible.) Really, once you have metastatic prostate cancer it's very important to have a medical oncologist if at all possible. It's no longer just about plumbing. The cancer is now as system-wide problem.
4. Also what is the "drugs and radiation protocol" that your doctors are following? Over the past 5 years protocols have updated with quite wonderful results, but sadly and oddly practices are not consistent across North America or around the world. The big randomized control trials defining the value of these new generation therapies are referred to on this form quite frequently.
5. For your question on frequency of PSA testing I have mine every 6 weeks now, for 3 years. At the beginning of your therapy your PSA will be dynamic and hopefully dynamic as in dropping. I'm not a big fan of "wait and see" and the cost of a PSA test is about $60. wait and see is sort of the attitude that in part got us into this situation in the first place.
6. You probably already know this, but it's worth emphasizing that PSA is "downstream" from cancer activity. Prostate cancer cells make PSA as part of their job. Sometimes we talk about PSA as if it is the same thing as cancer itself. And of course it's not. "PSA today" is sort of a measure of what happened with "cancer yesterday". You could say this is an argument for more frequent PSA testing.
PSA Scandal - Lost Years of Life - Updated re: QoL
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Thanks for your response. I just read your earlier post about this and I am so sorry how you were treated. Your statement about the lack of psa testing being criminal is certainly resonating with me. I did get a bone density test and I do have a medical oncologist as well as as a radiation oncologist. It was my primary care physician who ordered the psa test and when I asked him why I did not get the test previously, he said "I don't know."
Item 3. I disagree with the statement that once Metastatic it's a "system-wide problem". This give a wrong impression, it is a outside the prostate problem. It's somewhere in your system but not necessarily a system-wide. It can be in the prostate bed, it can be in a single lymph node or several places that can easily be treated.
This idea of it's a system-wide problem came from the days when we couldn't find it, when we didn't have scans to find it. So when we couldn't find it, and then couldn't reliably treat it, doctors hands were thrown up and it was said it's throughout your system. Because for all practical purposes if you can't treat it directly, you use system wide drugs.
We CAN find it today and usually directly treat it today with pinpoint treatments. Now if your cancer was found very late because your having symptoms like pain, and scans show it's everywhere then it is system-wide but until then you should treat this like it's a few places that can be treated.
You're distinction is important; and I suppose the term oligometastatic covers this.
Actually, even with modern scans, everything can't be found. If there, but too small to show on even the most modern scans, it's there and probably growing if not treated systemically. At least, there's the potential. So the problem is still there, although much narrower than 10 years ago (and probably improving all the time).
I feel a first application of ADT along with radiation allows the ADT to kill many/most/all of the tiny tiny PC cells. You want to of course have removed any chance of continual seeding from the prostate, if the prospect of seeding from the prostate off ADT you need to rethink your care.Dr Kwon early on told me PC doesn't spread like people think. It has to grow greatly before a tumor will shed cells to grow elsewhere, PC cells are fragile and if some were to shed into your blood stream they overwhelmingly would not survive the turbulence of passing through the heart.
PSMA scans cannot pick up PC cells less than I forget the actual number but in the millions like 10 million cells. That's a known fact at this time.
But as time progresses with the disease these should be growing, and after a period of time become detectable. Then you attack them directly if possible. There are multiple ways to do this. After a certain period of time depending on your doubling rate you'll see the ones that were seeded by your prostate.
I had read results of a PC study completed several years ago that stated that attacking PC metastasis with radiation found using PSMA scans was producing longer life expectations. And it was believed that PC could become not a death sentence but a manageable disease following an attack mode of care.
You need to become a expert in YOUR cancer and seek out the best options.
I live a normal life, actually a extremely high performance athletic life not affected by all the awful side effects from ADT. I test monthly to bi-monthly using ultra sensitive PSA tests.
My PSA has become stable at a fraction of 1, eight years into this trip for the first time off ADT.
I believe I have made the correct decisions for ME and MY cancer. I hope my PSA and scan results continue to show no progression. And if we do find another positive somewhere down the line I will continue to use my current approach to kill it.
But I now live without the cloud of PC hanging over my head or the awful effects of ADT on my health and well. I did not accept that ADT and castrate resistance was the only choice.
I plan for a long life and death not from PC.
You should fire your PCP, get a new one. You should talk to attorneys until you find one that will take a law suit against your PCP. Doctors have been found guilty in previous lawsuits for exactly in your case failing to prescribe PSA testing, or even digital rectal exams.
You should have been given psa testing in your early 50s and yearly after that.
Believe me you can win that case
Too late now. And it actually wasn't specified as standard of care in the particular Canadian jurisdiction I'm in. It's a top to bottom failure.
I was in the same boat. My PCP would not do a DRE. She said she would not know what to look for. Really?? Did a PSA test at that time and it was 4. Did not order a follow up in a timely manor. Nine months later i went back and asked for a DRE and PSA test. Again refused the DRE. PSA came back at 9 but never contacted me. Referred me to a Urologist, which took two months, he did the DRE and found it . By that time I was metastatic. I considered a lawsuit but you can’t really sue doctors in Canada unless it’s a a really incompetent act.
I guess I’m 4b, barely, but it’s never been a point of discussion with my MO. I normally have the ‘official’ PSA test every 4 months when I see my MO and get my Lupron injection. My MO has also put in standing orders for me to get a PSA test at my discretion when I feel the need. I will do that if I’m feeling some anxiety about my PSA. Sometimes I dont get any extra tests between my MO appts and sometimes I do. At times my PSA is moving around a bit and I will get a test to just get ahead of things should a small upward blip becomes a trend that I feel needs to be addressed before my usual appt. I never get them more frequently than a month apart.
My old primary care doc started doing the DRE when I turned 50. If he didn’t feel anything abnormal he would ask me if wanted a PSA test. His concern was that because the PSA test gave a lot of higher normal readings that were not caused by PCa he didn’t want patients to go through the physical and emotional stress of determining if they actually had PCa. At the time I was fine with that approach as cancer wasn’t even a possibility in my mind. Silly me. I got my first PSA test at 57 yo when he did feel something a bit odd, a firmness in my prostate, and my PSA was 2.4 so nothing more was done. Again, I was fine with that. Sixteen months later my PSA was 58. Looking back maybe some further investigation should have done on my form prostate.
Were your pelvic lymph nodes detected via PSMA PET/CT or conventional imaging?
via PSMA
Hopefully, it's still curable.
To your question, I have been frequently testing when and where I want for many years, pre and post diagnosis. IMhumbleO it is a simple, reasonably priced blood test. I also have imaging and liquid blood biopsy testing well ahead of most. I choose to not give this beast time and obscurity whereas many docs, centers and insurance providers seem willing to do so. Hope this helps. All the best!
Not sure of your age. My PCP did a baseline PSA at 50 and discussed the pros and cons of PSA testing. I pushed to have PSA done annually. Despite this during COVID age 56 my PSA started rising and I had blood in my semen. Retested in 6 months PSA had increased and a Biopsy almost a year after first elevated PSA showed T3bN1 Gleason 9 prostate Ca. It sucks but can’t go back in time. I understand your frustration . The What ifs can be overwhelming. I try to only worry about what I can control (easier said than done) and live my life the best I can.
I'm 69. I didn't even think I should be getting the PSA test until a close friend was diagnosed with PC. Yes I know it is water under the bridge though that does not help with the fact that I'm a little angry about all this. And my hope is that by raising a stink, my doctor will be a little more vigilant with his other patients. BTW, I'm with Kaiser which has treated me pretty well through the early stages of treatment though stuff like this causes me to question their care.
so many doctors don’t believe in PSA tests. Stage 4 with Mets here in Aug 2016. My urologist had me taking Avadart a drug to lower the PSA. 🤬 after an annual showing my alkaline Phosphate level off the scale. I was diagnosed. Instead of PSA of 3 or 4. It was 30. Now my oncologist gives me a PSA test every 28 days with my shots.
Early on in my treatment I would test PSA, Testosterone and Alka Phos every 30 days. This was recommended by Dr. Myers. I now currently get these tested every 6 weeks, I want to know of any changes ASAP so I can plot a course of action. I always get bloodwork PRIOR to seeing my doctor so we can discuss results and I’ve had a chance to review options. I’m Gleason 9 stage 4 and been battling this for 11 years now.
Ed
In addition to a baseline bone density scan and testosterone you should ask that your estradiol to be tested along with your PSA. If your doctor refuses to agree to these test get a new doctor. After initial treatment for PCa I would go for testing every three months until you are satisfied your PSA is not rising.
Thanks, looking into estradiol test to see its significance in treatment. I switch from the Casodex I was taking before getting the Lupron shot to Zytiga/Prednisone in a few days and I'm supposed to get a blood test every 2 weeks after I start to monitor liver function. MO said we didn't need to also test for PSA for several months but may ask for the PSA testing more frequently.
Everybody is different. I had annual PSA tests that were never >4 but I have stage 4 cancer anyway. I also know two men with persistently high PSA that do not have cancer. That's the way it is. You have stage 4 cancer, go forward and don't look back.
SteveTheJ . Not surprised that people with a VERY LOW PSA , have cancer. And those with VERY HIGH PSA , do not have cancer . A PSA Test and DRE are red light signals only , as is an MRI , the latter being more accurate based on the RADS Score . RADS 1 , 2 & 3 less likely on Biopsy , RADS 4 70 - 80 % chance of cancer and RADS 5 HighRisk of finding cancer on Biopsy .
Many prostate cancer sufferers are unaware how high a PSA can go . In the thousands . The highest PSA recorded was over 20,000 Yes " TWENTY THOUSAND ".
I had no PSA tests until after I had prostate cancer. It was just a stroke of luck that I had a urinary blockage that led my urologist to a biopsy. That was 17 years ago. Since then, I check quarterely.
As a follow-up to all this, how often should your MO be seeing you after you begin treatment?
That depends on whether treatment was changed and if there are symptoms or side effects. Early response to some drugs can help determine how well they will work down the road.
My MO sees me every 3 months unless something changes. Right now I’m doing radiation, so meet with my RO every week.
I just tell everyone I know to get a baseline PSA as soon as they are 50 and test every year after. Others may disagree.In my case I had a PSA now and then from age 50 and it was always 0.7. Then I had PSA done in 2019 and it was 1.4. Still well inside the reference range, right? Well, then the pandemic happened, and I kept putting of my annual physical. Finally went for a check up October 2023. PSA was 23. Ultimately discovered Gleason 9 but thankfully no visible mets.
Had I been better informed I would have realized the change from 0.7 to. 1.4 represented a doubling of my PSA and would have monitored more closely. I am not sure if some plans won't nt cover PSA every year? But my advice is check it annually, I would have been in a much better situation had I done so.
if I read you correctly, you are asking if you should have had PSA test as standard care years before your cancer was discovered. I am by no means expert, yet I would pound the table that the answer is yes. Partly to discover cancer early. Mostly just to get a baseline since the change in PSA is often the biggest red flag. I have been telling my younger friends in their early 50s that they should absolutely be getting a physical every year and a PSA test/DRE along with that.
so if you are on a treatment plan. Your PSA blood work will not be accurate. It takes a few months for the treatments to get out of your system.
Greetings dieselbeagle,
Of course you're angry..... so am I about my doctors who have fucked up. But you have to put that anger to a better cause.....and make sure you stay full speed ahead and don't look back. BTW I have a PSA blood test every time I have a boost of Lupron (every 3 months).
Note: Excuse me if I don't make sense, I'm getting more senile day by day.
Oh yes, if possible please update your bio, Thanks and keep posting!!!
Good Luck, Good Health and Good Humor.
j-o-h-n
You are already getting poked every 2 weeks as you start Abi. It doesn't cost much to test PSA monthly. I would insist on it. I was tested monthly for years. Now quarterly. I saw my MO every 3 months for years. Hope you respond great to treatment.
I had the exact same experience as you PSA 4.1 in 2012. wasn't mentioned by my doc who then retired New Dr. never added PSA. After some prostate issues in 2023 I asked for PSA - 500. That was a surprise. Changed my Dr.
But you just have to let it go now. Do your own research no matter what the Dr.'s say, also get a second opinion on everything. You should have a medical oncologist.. Live and Learn. Make sure your kids and grandkids know more than you or I did.
I am 70 and have recieved a PSA yearly for 20 years as my father had prostate cancer in his 60’s. In December of 2022 my PSA was at 1 which is where it had been. I also saw a urologist yearly(July 2023) for DRE as my primary care stopped perythis base on standard of care. I had very slight slowing of urination and up occasionally at night if I drank extra fluids.My prostate felt”firm”. In March 2024 my PSA rose to 4 then one month later it was 7. In July 2024 I was diagnosed with 4b Pca, Gleason 9. PSA’s are important but they don’t always tell the whole story. Maybe if there are symptoms also get a prostate US?
"Standard of Care" telling physicians not to perform a DRE (Digital Rectal Exam) is the height of stupidity (pardon my rant). It is barely more invasive than a blood pressure test and the only expense is an exam glove and a cc of lubricant.
Having said that, before my diagnosis I was a patient that did NOT look forward to a DRE and would not have requested one. But that was ignorance on my part (and a little embarrassment). I am glad my (annual) DRE suggested further investigation.
Deisel, I had the same experience my trusted 'old' doctor 8 years had been giving 2 blood panels a year for general blood work. He always omitted the PSA because he still adhered to the archaic and cosmically stupid practice of denying this VITAL medical data from his patients over 70-- PSA Deprivation Syndrome for older men.
I had a blood draw panel done to check my red cell count while Dr. Clueless was on vacation and, by default, it included my PSA ; LEVEL 140--wow what a surprise I have advanced 4stage prostate cancer. PLEASE take every opportunity to re-educate those in the medical profession that all GPs should be giving PSAs to their adult men and particularly after age 70! It is crazy not to catch the cancer at stage ONE! I tell this story to every doctor and nurse I am in contact with and I hope to be speaking to every medical group that will listen. These old fart MDs are potentially robbing years from the lives of their older patients.
I had the same problem. many of us guys have had the same problem of not getting tested for PSA by our doctors. I was diagnosed with prostate cancer in 2018 when I moved to Arizona from Illinois the doctor in Illinois that I had for 20 years never tested my PSA. I'm now told that was to protocol many doctors were working under due to too many false positives. The insurance company got tired of paying and they used an excuse that patients were getting scared. Should you be aggravated I'm told I shouldn't be aggravated because that's what doctors were told to do. That's ridiculous! I am aggravated because we did not get treatment when needed. The insurance industry tried to do the same stuff with women in breast exams, stating too many false negatives. The women fought back and won. Slowly doctors are starting to give PSA test to men particularly from 50 on up in age. Sad.Wishing you the best.
Well Diesel, you could look at the last 10 years as being worry free. I had a similar thing happen with me, but it was my own damn fault for not taking a higher PSA more seriously. My diagnosis is very similar—4a with lymphs involved. Once I started ADT, they checked my PSA every 2 months. Having started Abi/pred post RT, my MO still has me do bloodwork every 2 mos, probably more to check my health while under the adt/arpi regimen. But you’re a good example of why men should have their PSA checked periodically. Not every 10 years.
Thanks Mababa. Have you had any SE from the Abi/pred. I see from your profile you were only doing 500 mg. I'm about to start 1000 with the pred after getting Lupron a few weeks ago (still on Casodex).
I upped my dosage to 1000 mg one month ago after taking the half dose for 4 mos. I had concerns about the SEs. I adapted to the half dose with no significant SEs. My new MO convinced me to try the full dose at our first mtg. I’m now experiencing more significant SEs: nausea, greater fatigue, dizziness, malaise, sleeplessness, and brain fog. It’s possible these SEs may diminish as my body adjusts to the higher dosage. Hope so otherwise not sure I’ll make 2 years on this stuff.
I am testing for PSA weekly. Also estrogens and androgens.
My oncologist agreed to such frequent testing because I am a clinical trial of one. I also have CBC and CMP monthly to ensure any side effects on organ function are detected before irreversible effects hurt me.
PSA dropped from 13.3 before prostatectomy (October 2023) and 4.67 four months after prostatectomy, dropping steadily to 0.020 in October 2024 and remains hovering around 0.015 through today March 12 2025. So, success. And a lot less expensive than Orgovyx with (for me) more tolerable side effects. (Note: Orgovyx would be 100% free for me, but my chosen agent of ADT costs me about $1,500 a year for doctor visits and another $300 for the medicine. But worth it.)
weekly? And I thought I was crazy with my pretty much monthly to bi-monthly testing for past nine years through four treatments. I have to admit, I have stepped up my frequency since starting immunotherapy for my Stage 4 melanoma. Might therapy be effective on any lingering prostate cancer, or trigger an orgy? And I agree, the self-pay is worth it!
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