Since joining this club, the PSA test appears to be touted as the primary measure for PCa tumour growth and the effectiveness of different drug treatments. As its a relatively simple test, it seems this test is a popular way to see or guage the status of our condition. I appreciate Cat/Pet Scans are expensive, but I was hoping to gain some insight from this learnered forum about measuring the spread and control of PCa. Thanks in advance, cheers 😎 DD
Why is the PSA score such a thing of ... - Advanced Prostate...
Why is the PSA score such a thing of focus?
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Doseydoe
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Unless the patients has small cell or neuroendocrine PC which do not express much PSA, an increase in PSA may indicate progression of the cancer and a reduction of the PSA a positive effect of the treatments. Scans may be useful to confirm progression of the disease in patients having increasing PSA values before deciding to change therapies. Alkaline phosphatase along with PSA values may be also helpful to determine if the cancer is progressing and the efficacy of treatments in patient with bone metastases.
You are correct that it’s only one several biomarkers. Bone alkaline phosphatase is another important one if you have bone Metastases. PSA doubling time is also worth attention. You also want to track blood, kidney and liver markers and BMD. They are all useful in assessing response to therapies.
Thanks TA, 😎 DD
Good morning tall Allen,
What does the PSA doubling time indicate especially if it is doubling every 5 weeks or so?
Many thanks.
It indicates rapid progression.
ALP may not be so sensitive as PSA, but it makes up for it by being even less specific.
Doubling time can be more important than the actual psa itself. Sloan Kettering has nonograms on its cancer center website that will calculate doubling time
The fact is that the psa test is a rough, and I mean rough estimate of prostate cancer volume. It was co-invented by Dr. Murphy who was a genius at Northwestern in Seattle, think some 25 plus years ago. The fact that the psa is still a standard is a sad indictment on how little has been advanced in the battle against pc. As Tal said, there are other tests that can reveal much more and be more definitive in terms of what, where, etc. That said, the psa test is the cheapest and easiest test to use, which might explain, sadly, why it is still the leading test in dealing with pc.
I advise that several companies make the testing medium, and we have seen the results vary depending upon which is used-we have tested and found that results can be as much as 20% out as compare to a different medical supply firm.
Thus, one should always be tested at the same site, if possible, and most certainly, if the psa results are being used as part of treatment, make sure that the same lab processes your psa result.
There is little else other than Psa that can be measured to indicate if any treatment is working or not. Reliance on scans alone would be very expensive. During any treatment that does lower Psa may not mean the amount of Pca has gone down. Whatever Pca is in a man has a certain volume and weight. Getting Psa low with ADT may not change these things much because ADT puts Pca to sleep, and even while it sleeps it grows a bit. Some Pca cells might die due to ADT, but not many it seems. So Psa is all we have, but now there is also PsMa and that can indicate if Lu177 will work or not, and then there's FDG scans that can find Pca that won't respond to Lu177. When Psa rises, no man can sit around ignoring it.
Patrick Turner.
When PSA rises, one should not sit around ignoring it, but nor should one automatically panic and change course. A single measurement (or even two or more) does not always mean a continuing trend. Some medical oncologists report occasions of an initially worrying PSA rise that later falls and stabilizes on its own... or, of course, of a reassuring low and stable PSA that hides the true progression of a lethally aggressive cancer.
I've had Psa bounce up and down like a yo-yo since 2009. Each time treatment of some kind brought Psa to a nadir, and then started to rise, it always kept rising, and never went up a bit, then down a bit and so on when it wasn't being treated. Last nadir after Lu177 was 0.32 last November, but 3 weeks back it was 1.3, so its doubling fast, I do not expect it to level out and stay at say 2.0 for awhile, or go back down while presently only having ADT which stopped working years ago, and taking Xtandi, which I began last April, and is now probably not working. But I still have to wait another 5 weeks to see what Psa does before tests and more scans might be done to choose best treatment. Without more timely treatment I bet Psa will just zoom upwards indicating the aggressive nature of my Pca that docs said I had back in 2009 when I was diagnosed.
Patrick Turner.
Yes, the frustrating thing is trying to predict what "my" cancer might be like compared to "your" cancer, or to the "typical" cancer. Prostate cancer as a term is just too generalized, and even trying to just divide it into "more aggressive" and "less aggressive" is woefully insufficient.
Without any medical treatment at all, I saw my PSA of 20 at diagnosis drop to 13 in three months and then rise back to 26 three months later. I have my own theories as to why this may have happened (diet, seasons, psyche, supplements, etc.) but I was disappointed that neither my urologist or oncologist appeared to have any curiosity at all. Their entire focus was: treat... now... and do it MY way (of course), and until then WHO CARES what the PSA does, or why.
Well, I care. And I want doctors to, too.
All my doctors have seemed to care when Psa began to rise.
They were with me about it. Maybe it helped that I turned up to see them looking so well, because I cycled a lot, was not overweight, didn't drink or smoke, so I had been doing all I could to remain healthy for years and had no other bad health conditions that had a big chance of killing me before Pca ever did. My attitude was positive, and over the years I have been seeing my oncologist he's grown to like me, and staff behind the desk know me by first name, and I always try to say something funny to cheer them all up. They kinda regard me as healthiest stage 4 cancer patient they know about. This is mainly due to good luck.
All docs I've been seeing had many patients to think about and limited time. In many cases, docs have no idea why Psa rises or falls, and all they can do is apply what they have learnt to be standard practice. The patient can't really know much about his Pca because he's not trained in medicine or a biologist. So what happens is that most patients are terrified by Psa rise, especially when ADT fails or when add on drugs like Zytiga stop working ( fail ) or when chemo fails, or anything else fails, so they have cycles of hope and then despair. I watched a friend die at 59, 3 years after diagnosis of Pca. RP hardly worked, Psa went up after op, ADT gave 3 months of suppression, Cosadex made Psa rise, not fall, then chemo lowered Psa but after 3 shots it began to rise, and after 10 shots he was back to 40. He considered Lu177, but docs thought he ought to have DNA analysis for Brac2, and he was positive, and sure he was, so they tried PARP inhibitors which made his Psa go to 432 in 5 weeks. A bunch of new mets appeared in his liver, and he became so sick he could not have Lu177. He could hardly speak to me from his hospital bed on the phone. He died soon after. This goes on all the time with some patients we will never know. there's a "30%" chance that if diagnosed with Pca, it will cause death, but on death certificates the cause of death is often written as heart failure, liver cancer, long cancer, etc, but it was Pca that had spread. So maybe death rated caused by Pca for those who are diagnosed is higher and I just don't know what real figures are. Doctors often do not keep a big detailed record of their patients, the hospital may do this, but this large information record is not used for research trials because its just not scientific enough to make conclusions. I've gone completely public about my Pca history for the benefit of all others and anyone can see my Psa graph and history at
turneraudio.com.au/Patrick-...
I think I could have been much more un-lucky to have Pca spread much faster and widely and into organs and then be un-treatable by anything. Unfortunately, this happens to some men.
Getting Pca is an unwanted voyage into the unknown. None of us such a voyage that leads to mortality. Its a challenge to keep the doctors we see filled with idealistic enthusiasm and confident that what they try will always work. At the same time, they really cannot know what might work, and I prefer doctors who are honest enough to say "Well, next thing we normally do is try chemo, and there's a good chance it won't work, so if it doesn't after 4 shots, I'll refer you to getting Lu177 if you want, because your PsMa scans indicate that might work..."
That was after Zytiga failed, Psa was about 7 and there was a delay of a 3 weeks before chemo started, Psa was then 12, and chemo didn't work, and I got referred to Lu177, and had a 5th shot of chemo while I waited, and in month until I got first Lu177, Psa fell from 50 to 25, and nobody knows why. Then Psa remained nearly the same for first 2 shots of Lu177. That didn't mean it was not doing anything. Too many other cases indicated it MUST be doing something. Anyway, 4 shots of Lu177 were enough for docs to tell me I'd had a good response, and no need to continue with more - at least for quite some time. Some men don't respond to Lu177. How come I got lucky? I just don't know.
Anyway, my friend who died last year played tennis regularly right through 10 shots of chemo, and walked his dog every day. He had support from a beautiful wife of 50, and had two good lads in their teens. That these ppl lost their breadwinner man was a tragedy, my eyes water when I think about them. Life is what it is, and cannot be expected to be wonderful until you get to 100.
So be pleased you are alive, and take it day by day, and look for best treatments and docs who might help. Not much else anyone can do.
I'm having nice quiet day here, trying to arrange to have a swimming pool fixed after the inevitable problem of its old age has led to it leaking and needing some care.
But If I was going to die next week, I would not care about the pool, or the clutter of my possessions, or what doctors felt or said or did. Having enough future left means I still care, and I like my friends.
Patrick Turner.
Did you ask your doctors why they are disinterested in your PSA falling (and then rising,) without having had medical treatment? And- why didn't you get medical treatment when your PSA measured 20 at DX?
To your first question, when people display a lack of (intellectual) curiosity I don't usually ask why, unless I already have a pretty good relationship with them (and feel okay with busting their balls). I sort of smile to myself and think, well, that's just the way this person is.
In general, anyone devoted to a particular ideology or to blindly following an established protocol (like say, the consensus "standard of care" of medicine influenced by threat of malpractice accusations) is usually a person who plows ahead without frequently pausing to wonder "why?" at every uncertainty.
And... a decision to not get medical treatment asap arose from the knowledge that most PC is slow-growing and not immediately lethal. So at Gleason 3+4=7, I figured I had a little time to research ALL options.
When I finally got around to doing the scans (suggested with such a high PSA) about 6 months later, and it turned out I had mets, I had by that time already concluded that this diseases is BY ITS NATURE a system one.
That means I had already decided there was simply not enough evidence that definitive local treatment could provide truly definitive cure. There appears to me evidence that such treatment, in addition to obvious side effects, might actually support the ultimate return and progression of a more lethal form of disease years later.
So now I am doing the research on ADT and chemo and other systemic treatment rather than just letting an oncologist TELL ME how it's going to be. Not too happy with my options, but hey, they are what they are.
I am now stuck on the curious and confusing roles of estrogen and testosterone (and diet, of course) and am convinced that the current standard of CONTINUOUS low-T hormonal ADT that ensures castrate-resistance is often a death sentence. Seems like being on death row, waiting for the next stay of execution with ZERO chance of either pardon or new trial.
So at least I know what I will NOT be doing.
In any other area, where is "success" defined as choosing an option you KNOW will quickly fail and then following that with an endless succession of other known failures? And how many diseases are treated with the artificial imposition of a DIFFERENT disease (low-T) that helps compound and worsen the same life-threatening symptoms (anemia, bone-thinning, etc)?
There's got to be a better way. I just don't know if anybody has found it yet. I think BAT sounds the most promising.
I appreciate both your situation, the way you are investigating it and your thorough response and I wish you the best. FYI while ADT and other various treatments are as you have accurately described, for most people they do appear to extend life. I was dx Gleason 9 with a few Mets and have been on Lupron for 7+ years now. I recently had to restart Zytiga. I don’t like the side effects but I am more than willing to accept them to prolong my life. I wish you well with whatever choices you make.
Thanks, wish you luck as well. I certainly can't argue that CADT is probably not going to be better than doing at all. The other big question for me is, do I start ASAP or do I delay? Either way, the decision is going to be based more in faith and shaky evidence than in pure irrefutable science.
My inclination of late has been to attack with a combo ADT for a year or so and then go off treatment for as long as reasonably possible, even in the face of an initial PSA rise. Since I still have my prostate, after all, it is going to keep making PSA when I stop ADT.
Don't know how long I will go, though, without getting an attack of PSA Panic!
Your conclusion that the disease is a systemic one is exactly what our research has led us to conclude as well. My husband's initial numbers were the same as yours. He did the surgery, but with massive research, we have so far put off the radiation and ADT.
He was 3+4=7 pre-op and 4+3=7 post op and PSA=11.9 pre-op.
His PSA was 3.15 100 days post-surgery. In our ignorance, we cut out sugar, but did the Keto diet and kept fats and proteins high. His PSA rose 41.27% in 14 days. With further research and self-education, we immediately cut the protein and fats as well and slowed the rise to 2.25% 19 days later. We were scrambling with the research and putting together several protocols (including what the government of Japan spends 25% of its cancer care budget on, but it unknown to U.S. docs). After 35 days of doing it all consistently, his PSA dropped 31%--to 3.16.
This is a disease of mind-boggling complexity, but the only time I am in despair is when I am on sites dealing with mainstream drug therapies. The book that pointed us in the direction we are currently on was "How to Starve Cancer (Without Starving Yourself)," by Jane McLelland.
The somewhat hokey title put me off, but it is anything but flaky. Tremendous science. I have verified all through my PubMed researches.
We are applying today to the London Care Oncology Clinic which is doing the same protocol as McLelland's book details (which deals with the ostensible metabolic pathways of the cancer stem cells, the root of all metastases).
I am new to this site, but wanted to at least add to the pool of options out there. It is hard to discuss anything that isn't mainstream drugs or radiation without sounding like a nut, and we are both pretty hard-core skeptics, but the PSA numbers are at least going in the right direction in giving us feedback on dealing with the disease as a systemic breakdown, as well as attacking the stem cell angle, which chemo and radiation both miss, as they target only the rapidly-dividing cells.
As with ADT, one does not want to fool one’s self by simply masking the PSA – we need a cure.
Yes, the focus on sustained ADT to keep the PSA close to zero sometimes ignores the long-term outcome of the disease. My view on ADT as far as an EARLY systemic treatment is to try an intense one-shot application just to de-bulk the cancer load, and then go forward with other approaches as long as possible.
My initial diet at diagnosis was not just keto, but was low-calorie as well as very low protein. It did great to quickly bring down my BMI and shed extra pounds (40 of em!), and my PSA went from 20 to 13 in just a few months. Then I decided I was losing too much weight, too quickly.
But when I upped the calories and protein, PSA popped right back up. I ditched the animal protein altogether and added back carbs from fruit and beans, but PSA keeps rising. So I think the caloric restriction was the initial key, but that's not something I can sustain except in the heat of summer months (my winter-brain DEMANDS calories in the way of a hardcore drug addict).
I'm curious, what is the diet (in rough terms) that you are currently having the best luck with? Is it directly from Jane McLelland, or a variation on that?
In addition to what everybody else has said, the big downside to scans is that they involve radiation, so even if they were cheap and easy you wouldn't want to get scanned every three weeks during chemo, whereas blood is being drawn anyway so there is literally no downside to doing a PSA test in terms of the test's effect on the patient.
Could not an elevated PSA, when the prostate is still in its original position, be caused by nothing more than an infection, irritation, enlargement ???? AND NOT an indicator that PCa is present. Then followed by a 3TmpMRI and other scans or blood/urine tests.
Following the removal of one's prostate would not the return/rise of the PSA then be more concerning since it would likely indicate that PCa is present.
Exactly. That was (and still is!) a problem when rising PSA began to be used as a marker. A larger and perhaps inflamed prostate is going to give out more PSA. It has been suggested by some that measured PSA levels should always take the volume of the prostate into account. (A high blood PSA in a man with a normal- or smaller-sized prostate might then be considered more likely to be one with clinically significant cancer.)
It has been argued that the 1990s saw an epidemic of RP that was not truly warranted, and many men who had their prostates removed should simple have been treated for benign BPH and then put on active surveillance, to see if their low-risk cancers really posed a threat to their wellness and longevity.
As one who has had over 120 PSA and T tests, plus four pages of other blood work and two dozen nuclear bone and soft tissue CT scans since 2003, it is how your medical oncologist measures effectiveness of treatment.
GD
noahware in reply to
The fact that PSA is how a medical oncologist measures effectiveness of treatment is what worries me going forward. As Patrick says above, ADT will put my cancer to sleep. My low PSA will tell me the cancer is sleeping.
But who and what will tell me what that cancer is doing while it sleeps, and what it intends to do when it finally wakes up? All I know for sure is that while it sleeps it will be working hard to become resistant to current treatment.
Me thinks my GL10 NEVER went to sleep since it awoke and began living the high life. Might be on a HOLIDAY chilling out while CELLS stroll around circulating in my highway of vessels BUT definitely NOT sleeping .
in reply to noahware
Unless one kills with systemic treatment, it doesn’t go away on its own. The highways and byways of the body - lymphatic and vascular system - is how the mutated cells travel......
noahware in reply to
No need to kill cancer... only a need to control and disable it, to keep it from killing (or disabling) you.
Hi Noah, for me as a newly joined member, controlling the spread of this disease and getting my organs (bladder and kidney) back functioning has been my current focus. Your comment of controlling or disabling the PCa rings true for me and bouys my spirits. If I can get to that point and put the chemo behind me, I will be relatively happy with my situation. Cheers mate, 😎 DD
Be glad that we have a marker like PSA ; it tells us whether our PCa is progressing or dormant. Dormancy is a good thing however long it lasts . Metastatic PCa isn’t curable but durable remission is possible depending on the degree/ quantity / location of mets and treatments being used.
Grumpyswife in reply to
My husband's MO doesn't believe much in scans and it bothers me a lot.
What does he believe in?
I am not sure what he believes in. He told us about his disbelief in scans on the day we met him and I knew there would be trouble. He happens to be the closest and most convenient for us. However, I am always getting second opinions and just do what I want anyway.
Ask your doctor.... you can trade 1 DRE for 3 PSA tests.... It's in his HAND book......
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 02/22/2020 12:30 PM EST
Make sure he puts a finger on it pointing out just where it is in the HAND BOOK.
And doesnt have both hands on your shoulders while doing dre....just sayin😂
The most common indicator .
I think some counting of blessings is called for regarding the PSA test for prostate cancer, despite its shortcomings, considering that there is not nearly as good an indicator for, for instance, testicular cancer. I don't recall the details; there is one or more crude indicator used for testicular cancer (I think the inflammation indicators), but as I understood it, progression occurs more frequently without being reflected in those indicators, compared to PC progression without an increase in PSA. That is what happened to our son-in law: When he experienced severe pain beginning ~16 months following surgery for testicular cancer, there were no indications from the blood tests that the cancer was progressing, so the doctor blamed the pain on on psychosomatic origins or the testicular analog of phantom limb pain, and treated it with pain relievers. No scans were ordered. By the time scans were finally done ~4 months later, it was evident that cancer had metastasized to his lungs and liver. Prognosis for success in treatment is poor after spreading to the liver, and it became evident why: Blockages in the liver prevented treatment via chemotherapy, and he died ~2 months later while they were attempting to perform dialysis to combat liver failure concurrent with chemotherapy.
To me the lesson which I greatly regret not realizing earlier, and which I think probably applied for prostate cancer and perhaps other cancers as well as for testicular cancer, is this: Upon experiencing pain for which the cause is not irrefutably clear, the appropriate scans should be performed to see whether the cause of the pain might be spreading of the cancer despite no indication of progression from blood tests.
Also, I am thankful for these HealthUnlocked forums for prostate cancer and Tall_Allen's pcnrv.blogspot.com, and the knowledgeable and helpful contributors to them. I searched extensively for a web-based forum for testicular cancer similar to these, but did not find one, so I think none exists, at least not in the English language. I did find one that appears to accept only feel-good success stories (they rejected the account of the above that I submitted), which might be one reason why, although my searches did turn up accounts of phantom testicle pain and its treatment, they did not turn up any warnings to perform scans in the event of such pain.
All you can do is change your eating habits. I had radical prostectomy dealing with recurrence after 2 years reading a book from Chris wark how he beat cancer for 15 years and many other success stories
Dealing with thyroid cancer as well scheduled for surgery planning to change my eating and nutrition to avoid future cancer
Good luck
It was only a psa count over 5 nine years ago that I was found by the biopsy to have prostate cancer, Gleason 9. I had a radical prostatectomy. I had had no symptoms. The test has been instructive since then, too, four times. I know there are much higher numbers than mine, but every time it hopped up (rather than edged up or was stable) even some, it turned out the cancer was back. So far it’s been treatable with hormone therapy and radiation. I finish my last course of the latter this week on my tailbone; previously it metastasized to my skull, and hormone therapy — which I’m still on — plus follow-up radiation was totally effective. So I’m grateful for the test.
Psa is a lousy way to decide initial diagnosis. There are too many differences between types of PC. Mine tumor was out of the prostate invading my rectum at a high of 4.21. Get the finger and an mri.
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