Very low free PSA tests, no cancer -- a real puzzle ??

I am writing regarding my husband's very strange and illusive situation regarding his prostate journey.  I apologize for the length ahead of time. 

My husband just turned 54.  Healthy, slim, active, long-time vegetarian (20 years), eats all of the right foods and lots of them.  He was adopted so we don't know his familial history.  At age 50 he had his first PSA test for a workman's comp physical.  It was fine. 1.9 or somewhere in that range.  The next year it was very slightly higher but nothing the doctor worried about.  DRE's totally normal. 

The third year it jumped to 4.3 and he was sent to a urologist.  Normal protocol -- antibiotics and a free PSA was done.  Normal DRE.  The PSA came down to 3.8 after the antibiotic therapy, but the free PSA was only 17%.  To make a long story short, over the course of the last year and a half his PSA went up after the antibiotics were discontinued, his free PSA continued to be very low.  He's had a half dozen -- results have been 17%, 12%, 10%, 7% 9%.  All tests were run at the Mayo Clinic as that is the lab used by our clinic.   His PSA's have fluctuated from 3.8, 5.6, 10.3, 7.9, and the last one was 5.6.  All DRE's normal.

His first 12 core biopsy was done this past August and it was completely benign.  No cancer, no pre-cancer, no inflammation, no prostatitis.  Nothing!  It was noted that his prostate was 52cc.  The only physical symptoms my husband has noted was a weaker stream and a bit of trouble starting in the morning, but during the day everything is fine.  He does not get up at night, and has no urge to go.  All other plumbing works just fine.

A cystoscopy was done and everything look fine in the bladder but it was obvious his prostate was a bit large and pushing into the bladder which probably causes some uriniation difficulties he has, although minor.  The doctor suggested Avodart but didn't really push it since he wasn't really having that much problem.  He also said he could try Saw Palmetto which he ended up doing.  Within a month he said he noticed a difference but probably thought it was wishful thinking :).

When his PSA came back at 10.3% (a jump from 5.6% in three months) and the free PSA was 7% we decided right then and there to go to the Mayo Clinic.  We were fortunate to get in with an excellent urologist who confirmed that he was NOT comfortable with this history.  He got my husband in for a biopsy the next day.  They also ran a PSA and free PSA during the visit and those values were 5.6 and 9%  which were down (and up, depending on which one) from only two weeks prior.  DRE at Mayo normal.  The biopsy done was an 18 core biopsy with state of the art equipment and something called 'end fire probe'.  He was completely sedated which was different from the first biopsy which he tolerated with no problems whatsoever.  He was assured he did not want to be awake for this particular biopsy though.

Results:  absolutely benign in all cores, no inflammation, nothing, zip.  Interestingly, his prostate is now 31 cc. !   Is it possible the Saw Palmetto really is working as far as the enlargement!? 

He has not talked with the Mayo urologist, but has talked with his resident working with him.  He was not able to give him a reason for the very low free PSA tests other than if there is a cancer it is very small.  This is little comfort when you read Dr. Walsh's book "Surviving Prostate Cancer" and it has nothing positive to say about low free PSA's.  Not to mention a velocity that is all over the charts.

Mayo's recommendation -- repeat testing and possible biopsy dependent on test results in six month. 

Has anyone heard of these types of values and no cancer?  We have been preparing ourselves for months and had even discussed and accepted various treatment options should cancer have been found.  Let's just say that we were in a good place had the news been otherwise and were ready to act.  Now we are just more confused and although we have been to Mayo still not sure there isn't cancer there that has been missed.  Is anyone ever comforted by negative prostate biopsies??

Sorry this has gotten so long.  I have been reading this forum for months and have found it very helpful and uplifting to the spirit.  If I have missed a thread addressing my questions, please do not hesitate to direct me to it.

Peace,
nodaker

P.S.  After reading a thread on the value of capsaicin (hot pepper) my husband (and I!) have started taking it.

Post Edited (nodaker) : 12/13/2008 9:35:12 AM (GMT-7)

"free PSA":

Dr Scardino's publication indicates that "free PSA"  between 0-10% indicates that the "probability of finding cancer ..." is 56%,

"free PSA" between 10-15% implies the probability is 28%.

Like many aspects of Prostate Cancer it isn't black and white.

BIOPSY: 

As we know, biopsies can miss small cancers: there are countless examples of  where PC has only been detected after a number of tests.  In some situaions several "transrectal" biopsies have been negative, with subsequent positive results detected by the use of a "transperineal" biopsy. I have had elevated PSA with 3 biopsies over 6 years, and plan to use the "transperineal" method if my PSA figures rise.

SUPPLEMENTS:

My PSA recently reduced after use of several supplements including Cayenne pepper. The pepper was gradually increased to a teaspoon added to green tea and lemon juice.  Antioxidants like green tea, blueberries, olive leaf etc are often advocated. I also resumed my use of "Dr Red" "Blueberry Punch" and "Ginger Punch" that contain these antioxidants. Lab and animal testing of the products has been done at Sydney University, which is currently undertaking human trials.

 

Selmer, Before I forget, please do provide the information regarding curcumin.  I see your email address is unavailable so I hope you see my request here.

Regarding antibiotics, I'm quite sure my husband has been on every antibiotic used to treat prostatitis and for long periods of time, i.e. six week durations each time.  He's been on Cipro, Bactrim, and Levequin <sp?>  He's still on the Levequin post biopsy.  Is has not seemed to make a difference other than a larger dent in the wallet.

We asked about the transperineal biopsy but were told that is usually done after cancer is found and is a tool used to map out the cancer for things like radiation seed implant.  Certainly, as time goes by we will continue to push for this.  I do know that the last biopsy was performed using the "Myers protocol".  Dr. Myers happens to be the urologist he saw in Mayo who developed the protocol.  This protocol was specific to transect all parts of the prostate and not only was the peripheral zone biopsied, but also the transition zone.  This 'end fire probe' is supposed to also tap areas not normally reached on a regular biopsy.  All I know is that prostate cancer seems to be a real bugger to pin down in some cases.

We occasionally drink Pom juice, but mostly we drink a concoction of blueberry/sour cherry and unsweetened cranberry juice.  The sour cherries we grow in our yard.  It is not a very sweet juice but once you get used to it all others taste like syrup.  We are big tea drinkers and for years soy and tofu have been a mainstay in our diet.  My husband should be a poster man for prostate health, but if there is one thing a person can't change -- it  is their genes.  :(

It will be interesting to see in six months if the capsaicin has benefited.  It will also be interesting to see if the Saw Palmetto continues to work.  My husband is now convinced that it has made a difference.

nodaker

P.S.  Selmer, how do you edit your posts? 

Post Edited (nodaker) : 12/13/2008 9:37:10 AM (GMT-7)

Thank you James!

nodaker

Hi Nodaker-

I'm in a somewhat similar situation, but my PSA level has not been quite as high as your husbands. I'm 48, good health. As you see from my signature below, my PSA has been from 4.8 to 5.4 recently, and free PSA has been 7% to 8%. 

I read Dr. Walsh's book after my PSA test in July, and it scared the crap out of me. Particularly where he referenced the Baltimore Study on Aging, and taking a number of men who had developed agressive PCa and going back and looking at their stored blood samples from before they were diagnosed with PCa. In some cases these samples went back a decade before they were diagnosed, and everyone of those men had low free PSA long before they were diagnosed.  So they say there's a 56% chance of having PCa with low free PSA, but I have not found any mention of the other 44% and what could cause low free PSA besides cancer.  I posted here a few weeks ago, hoping someone could shed some light on it, got about the same response you did. 

After my biopsy in October, the urologist called to tell me there was no sign of cancer, my prostate was enlarged, repeat the DRE and PSA test in 6 months and go from there.  I have no symptoms of BPH.  My GP did not want to wait 6 months (neither did I), repeated PSA test after 3 months and PSA dropped from 5.4 to 5.2, free PSa stayed at 7%.  I have done a lot of searching on the internet for info on low free PSA, there is not a lot of info there.  Could be there is cancer present, but it is so small or in such an awkward spot that a biopsy does not catch it. Could be free PSA is low for an unknown reason.

I do know there is work being done on new versions of the PSA test- they have found that free PSA is made up of several things, and they are looking at the individual components of free PSA to see if one of these is a better marker for PCa.  Of course this is down the road a ways.

I found some interesting info about free PSA on the Fred Hutch Cancer Research Center (Seattle) web site, and Dr. Catalona's web site.  I'll put a couple links below.  If you do a search for "free PSA" on these sites you will find more info.

http://www.fhcrc.org/about/pubs/center_news/2004/nov4/sart3.html

http://www.drcatalona.com/qa/arch_psa.asp

Like you, I'm trying not to dwell on this.  Maybe its nothing.  But the look on my GPs face when she gave me the first PSA results back in July, she was worked up and you would have thought she was telling me I had cancer right then.  So I'll see the urologist again in March, repeat the PSA test before then, and unless there is a significant drop in the PSA and rise in free PSA, I'll expect another biopsy.   This time I will pick his brain for more info on low free PSA.  I would be very interested how things turn out for you guys, and if you come across any info on free PSA.  Please post again.  My e-mail address is available in my profile if you want to drop me line. 

Good Luck

Dan

Dan,  My gosh, your journey sounds so similar to my husbands.  Very frustrating to say the least!  It is also hard not to dwell on it, and one almost hopes they find something quick so one can get on with the business at hand.  My husband and I can't believe we say that!! but who wants to go on and on with biopsies like the gentleman Piano refers to (John T).  It will be interesting to keep up with your journey Dan and I'll continue to post what we find out.  Of course, I'd love for both yours and my husband's free PSA to skyrocket and your PSA's to go down, but my logic takes over and I have to echo what others and doctors say -- whatever is making these values be what they are is still there.   Dr. Walsh's book scared us on more than one occasion also.  It is not a book that my husband or I were able to read cover to cover without taking a breather to gather one's wits.  It does not leave one with a warm fuzzy feeling, but it certainly is a great resource.

Selmer, there is no question about it -- your math skills far outshine mine!  LOL!  When I read about the percentages for the free PSA -- 56% will have cancer, leaving the 44% that don't I wonder how they got those numbers.  Do the men really not have cancer, or haven't they found the cancer yet.  Are they looking at post-mortem prostates?  It all seems ambiguous.  I just can't wrap my head around the idea that free PSA's can be so low with nothing to explain it. 

Piano, I read John T's post with great interest because I hope that is not the journey my husband (or Dan) is on.  I also found it interesting that by blind luck we saw one of the three top urology oncologists (Myers).  I don't know if it was my husband's PSA history or he just had an opening when we called to make the appointment, but we got in with him (although he does work with a team of residents and our meeting with him was brief but very effective).  We also got in within ten days.  He is a 'presence' there is no question about it.  A quiet and very nice man.  I do know that with the Myer's protocol biopsy all zones are biopsied and we were told that included the transition zone.  I also know that they were expecting to find cancer as I had read the biopsy orders when it was sitting on the table which said suspected and probable carcinoma.  When we got the results, even the doctor (not Myers, but the doctor who did the biopsy) was surprised that all cores were benign.  He assured us that he got good samples from all zones.  It's a quagmire for sure.  For us, after going to Mayo there is really nothing more we can do but continue working with them through the process.  We'll be going back in 6 months as that was the recommendation.

nodaker

P.S.  Dan, can you post the link to your original thread here.  Thanks!

Post Edited (nodaker) : 12/14/2008 11:09:40 AM (GMT-7)

?'s   for Selmer.  When I look at your prostate bio I am under the impression that you also have not been diagnosed with PCa?  Do you account for the lower PSA's after your 2.9 PSA to the curcumin and your diet?  I find that encouraging!  Did your father keep his PCa in check for those 25 years through his diet and curcumin?  Also, why was his PCa inoperable?  I know, so many questions, but I am intrigued.

nodaker

I really made myself emotionally ill after reading Dr. Walsh and low free psa.  There is a calculator available online that calculated my chances of cancer at more than 75%.  My free psa has been 7% for a long time. My total psa has varied between 2.2. and 3.7.  I am 65.  I had a twelve core biopsy.  Came back with not one core with cancer.  Cancer free.  You can have a low free psa due to various kinds of prostatitis, some are prostatis doesn't even have symptoms. When I did the biopsy my wife held my hand. She would ask me how much pain I was experiencing with each puncture. On a scale of 1-10 most were at a 1.  I experienced more pain getting novacaine at the dentist office.  People are making a living by scaring the hell out of men.  Take a deep breath and remember, you probably do not have cancer, biopsies really don't hurt, and if you do have cancer they can cure it, not just treat it, cure.

Roy5085 said...
Hi All,

I am sorry to intrude. I am 59 and from the UK. Just had some private blood test carried out.

It seems that my FREE: TOTAL RATIO (PSA RATIO): = 0.17. and they report it is on the low side.

"Your PSA is within the normal range however your free:total ratio is low".

Can this be a matter of concern?

I am grateful for your or any advice.

Thank you & best wishes to everyone.

Regards,

Roy

Hi Roy, and welcome to the forum!
You managed to bring a 9 year old thread to life! Although I do see there was 1 reply before yours that was only 5 years old, so it is not the first time this has been dredged back up.

I'll let some one else give you the exact info you need on free PSA. Although, you ask can it be a concern? Well, almost any thing can, because there is nothing precise about this PSA business. What is your regular PSA, and do you have other prostate problems that might raise PSA, like enlarged prostate or prostatitis or both?

As for that 17% free PSA, I don't think that tells you all that much one way or another, even if lower free PSAs increase your odds somewhat. For example, notice the free PSA in the OP of this zombie thread: way lower than yours, but they could find no cancer at all. As for me, I can't remember what my free PSA was, but I think it was near 20 or very low 20s. And I used that as an excuse- along with my very large prostate AND chronic prostatitis for many years- to ignore my rising PSA even when it got to 4.0. I lived to regret that and wished I had had responded much earlier with a more thorough investigation. So, tell us what your regular PSA is and other prostate health issues(maybe even start a new thread), and don't let that free PSA either panic you or make you feel you should ignore the whole thing. Just keep an eye on it, that is all you need to do unless your regular PSA is already over 4, and or you have a less than perfect DRE. In which case, you might want to look into it a bit more and sooner rather than later.

Mark, just a heads up: the folks talking about "low fPSA =56% cancer" was 8 or 9 years ago, so they may not see your post!

Do you folks who posted today have any clue that this thread is from 2008 ?????