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

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nodaker
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 12/12/2008 11:03 AM (GMT -6)   
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)


nodaker
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 12/12/2008 5:36 PM (GMT -6)   

Selmer,

Thank you for your very thoughtful and thorough reply.  I apologize for the confusion regarding the % sign.  I did mean to use it with only the free PSA numbers.  I tried to edit my post to correct it but I can't figure out how to edit.  Maybe it's not an option in this forum?

To clarify:  The free (unbound) PSA values have been:  17%, 12%, 10%, 7%, and 9%.  I think there was another one in there but it was less than 12%.   What concerns us about these pretty dismal numbers is what Dr. Walsh says about them.  To quote from his book, pg. 150 "if the free PSA is less than 15 percent, it's more likely that most, if not all, of that PSA is coming from cancer, that the cancer is significant in size, and that it will prove aggressive."  I had been urging my husband to get a second opinion at Mayo and he had been semi-resisting until he read that.  shocked

We can't give enough accolades and praise for our experience at the Mayo Clinic.  Truly, a top notch medical facility and we are thankful that we now will have a relationship with the urology department.  My husband also has a good rapport with his  urologist in our town and actually the clinic here follows the Mayo protocol.  His doctor here had no problems referring him for a second opinion and all records and pathology slides were sent to Mayo.  We are fortunate and we know it when it comes to the cooperation of care. 

Regarding the capsaicin:  the thread in this forum was from a gentleman down in Florida who claims his prostate cancer was put on hold so to speak by the hot pepper supplements.  I also believe there is an urologist on this forum who was giving it a test run (to see how he tolerated it, etc. possibly to recommend in his practice).  I will try to hunt the thread down.  My husband and I have been doing some research also, and we even asked the doctor at Mayo.  She said there is some promising research with capsaicin and felt it would do no harm.  I also know about curcumin.  We don't take that as a supplement, but I use a LOT of tumeric in my cooking -- we eat a lot of veggie curries. :)  And, we also take Vit. D3 (1000mg/day) in the winter only.  In the summer we let the sun do its work.

I understand completely what you say about men and the percentage that have prostate cancer.  I guess neither my husband nor I will ever feel like he doesn't have it somewhere in there as long as his PSA and free PSA values continue to be less than stellar.  It's just a bit unnerving to think that biopsy after biopsy may be what his future holds.  We certainly are going to put this on the back burner and not stress about it for six months since no one is going to do anything until then anyway.  I doubt we are ever going to get cavalier about it though!

LOL!  re: 'end fire probe'.   smhair   guess that does sound daunting. :)  My husband said he didn't feel a thing with the first biopsy -- guess he got numbed up pretty well.  He said the 'noise' caught him off guard but that was it.   End fire probe is a whole different story apparently. 

nodaker


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 12/12/2008 6:59 PM (GMT -6)   
"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.
 
 

rocket1952
Regular Member


Date Joined Oct 2008
Total Posts : 26
   Posted 12/12/2008 7:00 PM (GMT -6)   
Isn't there something called asymptomatic prostatitis? Maybe it's worth a "shot" getting treated with an antibiotic to see what happens with the PSA?? Otherwise it seems you are doing an outstanding job.

nodaker
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 12/13/2008 10:08 AM (GMT -6)   
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)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4450
   Posted 12/13/2008 10:58 AM (GMT -6)   

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

In case Selmer has the weekend off, I'll answer.  See the little pencil icon on the right side of each of our posts?  Click it and it will open back up into the posting screen, there you can make edits.  Just click Submit again...


James C.
Co-Moderator- Prostate Cancer Forum
Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
Present- 1 year: ED- Viagra, pump continues, no response- Trimix ..35ml x 2 weekly continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.


nodaker
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 12/13/2008 11:38 AM (GMT -6)   
Thank you James!

nodaker

nodaker
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 12/13/2008 4:41 PM (GMT -6)   
Thank you SO much for this information.  I will order online from now on.  Today I picked up a small bottle made by this company from our local co-op.  http://www.vitacost.com/NaturesWayStandardizedTurmericExtract.  It is standardized and 95% curcuminoids, but not from the company you wrote about
 
I have to laugh about your assessment of using tumeric in cooking.  It is definitely yellow and it most certainly stains everything that comes in contact with it.  All of my white spatulas and utentils have these very dairylide yellow stains on them.
 
Here is one of my favorite websites.  It has very good things to say about curcumin.  http://www.whfoods.com/genpage.php?tname=foodspice&dbid=78
 
nodaker

Post Edited (nodaker) : 12/13/2008 3:07:02 PM (GMT-7)


AKRoamer
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 12/13/2008 7:29 PM (GMT -6)   

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



Age 48
PSA 6/2003 1.5
PSA 7/2/2008 4.8, % free PSA 8
PSA 7/14/2008 5.0, % free PSA 8
3 weeks Levaquin
PSA 9/2008 5.4, % free PSA 7
Biopsy 10/08 neg, no sign of PCa, told prostate was enlarged
PSA 12/2008 5.2, % free PSA 7


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 845
   Posted 12/14/2008 4:54 AM (GMT -6)   
A standard needle biopsy may not cover the whole prostate, and it seems that there are parts that are hard to reach via needle from the rectum. "No cancer" might really mean "no cancer in the parts we could get at".

This thread has more:
http://www.healingwell.com/community/default.aspx?f=35&m=1298738
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


nodaker
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 12/14/2008 10:37 AM (GMT -6)   
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)


AKRoamer
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 12/14/2008 12:38 PM (GMT -6)   
Hi Nodaker-
 
Here is the link to my original post.  http://www.healingwell.com/community/default.aspx?f=35&m=1296816

Sounds like your husband is in good hands with Dr. Myers.  We don't have a urologist in our little town, we get a visiting urologist for 3 days every month that flys up from a practice in Seattle.  Different doc (of the 4) every month. When I went in for my original biopsy appt in September, the rectal ultrasound machine they store at the hospital was dead, so the uro told me I would have to travel or he could do a "finger-guided" biopsy like in the old days.  shocked   No thank you.  I ended up going down to Virginia Mason hospital in Seattle for my biopsy, I think I've got a good uro there. Maybe some things happen for a reason.
 
That was an interesting post from piano, and your last post pretty much summed up my emotions. I'd like to think there's nothing to worry about, but everything I've read (and I've read a lot) says with the low free PSA, repeat the biopsy, repeat the biopsy. I don't want to resign myself to a biopsy every 6 months.  I think if this continues past my next appt in March, I'll start looking seriously into one of the new higher-tech or alternate biopsy procedures that have been mentioned.
 
So my plan is to eat well (I don't do too bad on that, but there's room for improvement); keep educating myself, and keep busy with other things.  Only problem is this PSA thing keeps coming back to the front of my mind.
 
Thanks for starting this post. Wish you never had to, but it shows me I'm not alone and gave me some new info.
 
Dan
Age 48
PSA 6/2003 1.5
PSA 7/2/2008 4.8, % free PSA 8
PSA 7/14/2008 5.0, % free PSA 8
3 weeks Levaquin
PSA 9/2008 5.4, % free PSA 7
Biopsy 10/08 neg, no sign of PCa, told prostate was enlarged
PSA 12/2008 5.2, % free PSA 7


nodaker
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 12/14/2008 1:15 PM (GMT -6)   
?'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

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 3620
   Posted 12/14/2008 3:24 PM (GMT -6)   
Nodaker,
There is a new urine test, PCA3, that is considered more accurate than free PSA.
Also I would recommend recommend a color doppler ultra sound. That's what finally found my tumor after numerous negative bopsies.
Tumors rely on blood flow to grow and the color doppler identifies areas that have high blood flow. After a color doppler targeted biopsy futher biopsies are unnecessary because a baseline picture is taken and if nothing changes no futher biopsies are taken. Also targeted biopsies are only taken on suspicious areas, 6 at the most. This is much better than a saturated 18 or 24 core biopsy, those really hurt.
Also I found that taking a Viocodine before the biopsy really helps.

JT
Diagnosed 10-08 at 63 with PSA of 33
PSA was 4.4 in 1999 and has risen steadily.
Had 13 biopsies and an endorectal MRI, all negative until 10-08. Two cores out of 25 with a gleason 6
2nd opinion with an oncologist said cancer found was insignificant, but suspected larger tumor somewhere.
Doppler ultrasound with target biopsy indicate a large tumor in the transition zone, gleason 7.
Bone and CT scans negative.
PSA3= 43; high normal is 35
Currently evaluating treatment options, surgery is not an option as a high probability of positive margin exists.
John T


Affinity
New Member


Date Joined Dec 2011
Total Posts : 1
   Posted 12/18/2011 6:55 PM (GMT -6)   
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.
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