Hello to everyone...I just wanted to share some of my thoughts after my 5 year exprience with my faher battling metastatic prostate cancer....
When my father was diagnosed his Psa was 205....back then i didnt know anything about psa whatsoever....after some time I read a lot and saw that many of his co patients in several sites were talking constantly about the fact that Psa should be 0 in order to have a chance to live longer...So i was scared because my fathers Psa was never there...in fact it was always on hundreds...on top of all it reached 620 before 14 months and we started docexatel...now its on 420 and raising a bit.....
What i want to say is this....during these 5 years my father never had any problem...He never got sick he never complained about pain or anything else....his scans are stable and his blood results apart from Psa are excellent...So i am wondering is Psa really a reliable indicator?
5 years I've talked and communicated with many of you guys here and you were all fantastic sharing your thoughts and helping me realise what i have to deal with...5 years i cried a lot and lost my faith many times mainly because of this indicator...the PSA....i admit that there were times that i didnt think anything else but this.....Keep in mind that through these years I saw some of his fellow patients die although their PSA was in zeros....
So,and i am sorry that i tired you,do i have the right now,after 5 years,to think that PSA is not really so reliable as I used to think back then and hope that my father will be next to us for a long time?Did we pass the time that we should be terrified about this number?You know I read here so many stories of co patients that their Psa is on thousands and still doing good...:)and this gives me great courage.....
The only thing that i can say to all of you that i really appreciate is ...Forget about numbers...at least this is what i will do..
God bless you all....you are my heroes....
Nick
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lyrikos
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Burnett1948. lyrikos I'm an Australian and I have been diagnosed with biological recurring PCa. I have also been told that while the PSA doubling is about 18 months I'm okay. My PSA is 1.5 and I get worried each blood test but have been able to relax when I have been told the increase is okay because the doubling time is okay. I question the PSA readings like you and you pose a good question. I look forward to a knowledgeable answer from the brains of our community.
It was recognized early on that the so-called prostate-specific antigen [PSA] was not PCa-specific. The FDA approved it in 1986 as a tool for monitoring treatment response / biochemical recurrence. It took a further 8 years before the FDA approved it for diagnosis [1994], but of course, it was already being used for that purpose.
My PSA was only 0.8 when a nodule was found. While far fewer cases are found with PSA < 4, the proportion of serious cancers is no less than for PSA=4-10. The original decision to use 4.0 as the cut-off for biopsy was due to the feeling that a 20% detection rate was acceptable. You can't biopsy every man over age 50!
These days we have the 4Kscore test (not covered by insurance) which could be used to eliminate most of the 80% negative biopsies. And also detect high-risk men in the PSA=0-4 range. There are reasons why, 30 years into the PSA era, this hasn't happened, IMO.
Urologists do not make money from PSA tests, but they do from biopsies. If the number of biopsies were to fall by three-quarters, this would represent a significant loss of income. And it would potentially greatly reduce the number of prostatectomies performed on inconsequential cancer.
Before Medicare cut the reimbursement for Lupron shots, doctors found reasons to over-prescribe. At $1,000 a shot it was applied inappropriately. Lupron use fell sharpely when the profit motive was removed. My urologist told me "We were all doing it." Medicare needs to state that it will not reimburse for a biopsy based solely on a PSA test.
Some PCa cells produce little or no PSA; others produce a lot. The value of the PSA test lies in being able to track the rate of change of PSA-producing PCa. PSADT (doubling time) is a very useful number IMO, but the PSA itself can mislead.
Thank you Patrick for the feedback....For sure i didnt know this.....
Normally, the PSA is in the seminal fluid. Little is in the blood. Prostate cancer can cause leakage from the prostate, and part of what leaks is the PSA. PSA itself is harmless. PSA in the blood can be due to prostate cells outside the prostate (mets), or to leakage because of damage to the capsule. It is useful in the beginning to catch prostate cancer, but I think that later, it is the change in PSA levels that is significant.
Thank you Martin.....it is this change in psa that i am always terrified of..but after 5 years and my father being in gleason 9 and having a lot of mets which by the way are stable I am just wondering ....since he is in hundreds all these years and his situation is stable is Psa really a reliable indicator?
What I've been told as an advanced prostate cancer patient is that PSA may be useful--for instance, in deciding to schedule bone & CT scans sooner than planned--but what really counts is whether or not they see any progression on the scans.
Yeap thats for sure Neal.....at least this is what i believe considering my dads case and others even in this forum that had high Psa but stable or improved scan results
Interesting - I had a conversation with my oncologist about this very subject. My PSA is 1.2 and has doubled in approx. 14 months. I asked is it possible for my PSA to rise to much higher numbers like your dad. He said that my cells seem to be more aggressive and that is really not probable, but you never can be sure. PSA velocity is dependent on the makeup of the cells in each patient . Brauny
PSA is not a very reliable guide for many of us. I never had a PSA over 2 until they found my prostate was full of Gleason 9 cancer. Even now after the cancer has metaztised I don't have high PSA. PSA is a good guide for most men with low grade PC, but for men with highly deformed cancer cells the PSA is not a viable marker. Unfortunately the other markers are not much better.
I so agree. My husband when diagnosed 11 years ago had a psa of 70 gleason 9/10. After surgery and radiation it stayed at .01 for 4 years. Went up to .02 and they kept telling me it was just a minor fluctuation or might still be settling 4 years after surgery. They wouldnt' do scan as his psa should have been around 2 if it had mets. A scan for something other than pc showed something and this was a year or more later. His psa was still under 2...1.10 or something like that. That's when they did scan and it was in his bone. His most recent psa has been around 5. Yet bone mets is spreading. His last psa was 2.15. Dr has no explanation why there's further spread but number dropped....
Trying my best my friend....as i sad before you are my heroes.....
My two cents. In March 2015 they told me my psa was 850. I asked what that meant. They informed me that I had cancer and more than likely it had left my prostate and had traveled throughout my body setting up housekeeping in my bones and lymph nodes. Ct scans and a bone scan showed 4 mets in my pelvic area and the lymph nodes in my chest and abdominal area looked like mini cancer factories. I immediately went on Lupron, Casodex, and Docetaxel . Six months later my psa dropped to the 40 range. In May 2016 I had another round of ct and bone scans. Everything was stable except the lymph nodes in my chest were slightly enlarged. My abdominal nodes had returned to normal. Bones mets stable. Now, with enlarged nodes in my chest, my psa dropped to 0.07. Made no sense to me.
In the last four months my psa has gone up from 0.07 to 1.8. My oncologist freaked out and ordered another round of scans. psa stayed at 1.8. This time around I have no enlarged nodes anywhere and my bone scan shows no progression. So, my psa has gone up but my scans show major improvement. (no enlarged nodes). It was head scratching time. "your getting better yet your getting worse". (I go to University of Michigan cancer center). They wanted to put me on ZYTIGA® (abiraterone acetate) right away. I'm of the theory of getting every last minute out of a treatment before moving on to the next one. My major reason for waiting is two fold, 1, I'm only 4 weeks removed from my discontinuance of Casodex. I'm going to wait another 4 weeks to see if I can get a positive response from Casodex withdrawal. Secondly, If and when my Casodex withdrawal no longer has an effect, It's Provenge time.
My point,(rant) is that I put more stock into scans than I do psa numbers. Now if, when my psa jumps up to 300 or so I will whack it with another course Docetaxel and let it clean house. I'm currently pain free, run 5,6 miles 4 times a week and lift weights the other 3. I'm 66. bottom line, I'm not going to let psa numbers, doubling time, velocity, stress me out. I'm of the opinion that scans tell the story, psa numbers bounce around like an Indian rubber ball, scans don't.
Yeah nameless I agree. During my ADT vacation,my PSA was doubling in six weeks. I panicked but my Oncologist didn't and put me back on Lucrin. I was and still am well and pain free so he said no need for scans as the treatment would be the same anyway at this point in time.
Hi Nick, I can appreciate how you feel because I am in the exact same boat as your Dad when it comes to PSA. Last reading was 190 a month before it was 240 and I have been off the meds for at least a couple of months. Started down this road in 5/2009. You can look at my profile. My last visit with my oncologist was middle of April. I might add I did seek a second opinion and was being treated by Dr. Myers in Va.in 2012-2015. He is retiring. Basically all through this journey the stress of PSA has been huge. Now I am beginning to wonder for what? Yes I have had a lot of low PSAs. I have had ADT, Zytiga, provenge, Xofigo and now just started Xtandi for 1 month to see if it has an effect on PSA. I have a small lesion on my spine L5 . No other bone mets. My last scans that I have all last year remain unchanged. Done every 3 months. I have felt great all along except for after robotic surgey and the side effects of treatment. So here I am so thankful to be going on my 8th year living life to the fullest. We will see how the Chemo pill xtandi has an effect on my psa. Side effects so far are minimal. I work out each day and bike ride. Diet is so-so. I used to do the med diet and stopped. Red wine no. Best to you and your Father. Bill in Ohio
Hi Nick, Before my diagnosis, I had sever pain in my left femur, which turned out to be PCa, my PSA was 2.5 at the time and my GP didn't refer me to a urologist (he didn't know about the pain as that was a month after my PSA test). My PSA jumped to 8.5 a few months later and I had a biopsy which showed I had PCa Gleason 10, with a dozen bone mets. It maxed out at 15, before falling to 0.2 after Zoladex and cryosurgery. It's now stable at 1.0 and I'm going through chemo. I tend to think PSA doubling time is more important and I also had scans 1 year apart, which showed my mets were stable. I think PSA is useful, but a very blunt instrument, which should be confirmed (but not too often) by scans. Best of luck for your Dad. Cheers Paul from Australia.
My PSA rose to 8 when I had initial treatment (proton radiation). PSA dropped to undetectable and stayed there for 15 months when it rose to 2.8. Checked 6 mobths later and was at 39. All scans showed only an enlarged pelvic lymph node. Started Degarelix and Cabozantinib as a clinical trial. PSA dropped to 0.6 but began to rise again. Scans showed lymph node size decreased, no bone or organ mets. My PSA rose rapidly again. Scans still showed no mets anywhere. Started another clinical trial with lupron, Zytiga and a test med. PSA dropped to 1.5, still no mets anywhere. I think PSA is a decent indicator of cancer pre-treatment. Post-treatment rise it seems to be a gross indicator but Id rather have a PSA at 5000 with no mets in bones or organs than a PSA of 2 with mets in bobes or organs. Scans more reliable which is why I like clinical trials as scans are done far more frequently than when under "standard treatment".
The main problem scarlino is that our onc is just seeing Psa in order to change treatments...we still have xtandi and jevtana and xofigo...but he doesnt look anything else....so i dont want my father not to have any treatment left just because his psa is increasing and his scan are stable...
Have any bone scans, CT scans, MRI been done? Without those your Onc is flying blind in my view. Can't telk if it is a micro-metastisis or full tumor activity. How old are you? Just wonder if your Onc thinks your age makes more investigation not a prority. Ask point blank why no scan tests.
Personally, I don't think that PSA is a very reliable source of information. Many men have a high PSA but no cancer. And some men have agressive cancer and the PSA is quite low. I think that when the PSA is high scans should always be done to see if the high PSA is an indication for cancer or not.
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