Low PSA, high % free PSA, Large Tumor

My case appears most unusual, so I am looking for others who may have similar characteristics. 

I am 64 with family history of prostate cancer.  I religiously had yearly PSA testing and DRE by a top Washington urologist.  Over the last 14 years, my PSA has slowly bounced up from 1.0 ng to 1.6 ng (about 28 months ago), then down to 1.3 ng (16 months ago), and then to 2.1 ng (3 months ago).  After antibiotics, PSA increaed to 2.6 ng (free PSA was at 26% and PSAD = .05).  My urologist said he didn't think I had cancer.  

I SAID DO A BIOPSY!  PSA velocity trumps everything.

 

A 15 core biopsy (47cc prostate) revealed 7 positive cores (80%, 60%, 60%, 50%, 40%, 5%, 2%); all rated Gleason 6, and three cores with evidence of perineural invasion (5 weeks ago).  The tumor appears to occupy over half the left side of prostate, and 2% of one core from right side.

I am currently queued for Da Vinci robotic RP at NCI (guided by e-coil MRI imagining), but the wait is still over two months, and that is frustrating.  Does anybody else know of such an extensive tumor with such a low PSA and high free PSA %?  Is my tumor fast growing or did it just not produce much PSA for a long time?

Dan  (4/20/09)

This is the kind of stuff that scares the jeepers outa me. My PSA is 1 and I am 50 yrs old with enlarged prostate. My URO said "dont worry with a gland as big as yours im surprised your psa isnt higher"

 So... I try not to worry then I see this.. My psa was .55 6 yrs ago. It seems as though its heading the wrong way.  Keep us posted on how you make out . I wish you good luck and I bet you will come out fine !

Cvc

Dan,
As you can see from my stats below, My PSA was under 4 yet I was diagnosed with aggressive PC. I think you are correct about PSA velocity which is whet triggered my biopsy and consequent Dx.

My dad had a low PSA all his life and all of his brothers have had prostate cancer and none have died from it with all going past the 80 year mark, my father will turn 80 in July.  After I was diagnosed my dad insisted on a biopsy and it was confirmed that his entire prostate was full of cancer and that it probably had escaped.  He was a gleason 7 3+4, this was three years ago.  He underwent external beam, hormones, and seeds and is undetectable today. 

My PSA score was low as well but my tumor was also pretty small, hopefully low psa means less aggressive but I don't know if there is any evidence to support that, good luck.

Welcome Reinhartdm:

Similar situation- tumor found on DRE- biopsy dec 08- 12 samples- 4 positive- 5, 15, 80 and 90 percent- all on right side- PSA 3.5 at time of biopsy- 2.5 in Feb 07-- Gleason 6--prostate 30 cc.

Brachytherapy consult scheduled for end of the month.

From: Reinhartdm 4/22/09
Update from above:

It is very easy to get paranoid, especially when your disease appears so atypical. My latest fear is that my cancer has metastasized to my bones. (My positive biopsy was only 5 weeks ago.) With a PSA of only 2.6 (free PSA = 26%) my urologist did not think I needed a bone scan, but I have been experiencing mild hip pain on the left side (where my tumor is located) for several weeks now. I keep hoping it is only arthritis. I'm meeting with my urologist tomorrow. I plan to have a bone scan and PAP test conducted. The doctor says PAP is too variable, and has recommended against it. Any suggestions?
Dan

On 4/20, JohnT noted that my stats (PSA = 2.6, larger tumor, GS = 6 on seven positive cores, free PSA= 26%) didn't "corrolate". I appreciate that he noted this, because this strange combination stats has befuddled me and my urologist. From my readings, it sounds like I may have a large neuroendocrine component (androgen independent PC). This, of course, will be bad news. Tomorrow, I will undergo bone scan and PAP test (although my urologist says the PAP is quite variable and may only distress me). There will probably be other tests to follow. I really appreciate all the feedback that everybody has provided. I have read so much about PC I don't recall everything I have already read. It is so overwhelming.

Dan 4/22/09

Dan,
The best advice I can give is to see a top prostate oncologist. Your urologist is over his head on this issue. Don't panic or jump to any conclusions on what you have or don't have based on what you have read.
The only thing you know is that that your numbers don't make sense. A large Gleason 6 tumor should be generating more PSA. There may be a few explainations for your situation.

The only one with the skill level to do good dective work on the biological level is an oncologist who specealizes in prostate cancer.
JohnT

Dan,
Checking in on you as my conditions were similar to yours and it helps to watch and learn sometimes from each other. What has changed (good or bad) and how are you being treated?

Stevec

Age:47 diagnosed 34 PSA Gleason 4.5 + 4.5 = 9
Prostate removed and started HT
HT 2005 to current (Lupron/Casodex) PSA between .02 and .08
4/2010: PSA at .08 Tumor discover (pain in left hip) at 3.5" dia.
4/2010 - 8/2010 Cho treatment (no improvement)
8/2010 RT 12 treatments
9/2010: To start Clinical Trials???

A doctor friend once said to me that "an uncommon presentation of a common disease is more likely than a common presentation of an uncommon disease."

Meaning, don't torture yourself with the fear of small-cell PC unless/until you have data that says you have it.

John T is right; see a specialist. You can retrieve your slides from whoever did the biopsy analysis initially and have the slides re-examined by a specialist. Then you'll know a lot more about what's going on.

Others have had good experience with color doppler ultrasound giving a way to look at the size/position of the tumor. This could confirm what the biopsy is telling you, or could indicate something else going on.

hi, Salva -

Velocity is important, to be sure, but I wouldn't necessarily agree that it trumps everything. I would say it trumps pre-operatively if the evidence otherwise is ambiguous.

I did a lot of research on the velocity question, because it affects me personally. In the three months between the PSA test that sent me to biopsy (3.6) and the RP, my PSA jumped up to 5.6. Now, many people don't bother to get another PSA after the diagosisis and before treatment, but I wanted to see if a radical improvement in nutrition might help. Obviously it didn't The jump in PSA freaked me out and started me reading the journals and talking to people. I asked my surgeon whether I should seek adjuvant treatment, given the high pre-op PSAV and short PSADT. He said no, given that my pathology (EPE-, SM-, SV-) was favorable. He said the path report trumps the pre-operative PSAV and PSADT. I said, "so what does it mean that my PSA moved up so quickly just before surgery" and his answer was "it means it's good that we got it out when we did. That's about it." Another well respected doc said essentially the same thing.

Still, I was bothered by the publications by D'Amico and Catalona et. al. around 2004 and 2005. And at the same time, I was encouraged by the nomograms (Stephenson, et. al.) Those authors said that they tested PSAV and PSADT and it didn't add any explanatory or predictive power once other factors were taken into consideration. Then finally, there was another article (Catalona also one of the authors) that said that PSA kinetics are predictive of a worse pathology report after surgery, but after pathology is taken into consideration they are NOT predictive of a worse overall outcome.

So, I am still trying to make sense of it all. The jury is still out on this. There is clearly a controversy raging in the literature; I found one "letters to the editor" exchange where Kattan and other challenge D'Amico's findings and D'Amico defends his work. I am thinking of seeking out D'Amico or Catalona for a consultation, just so I hear their views in my particular case.

Each stage of the process brings different information and different decisions to make. Which information is most important depends on the where someone is in the process of diagnosis and treatment. To stay sane, I try to keep my focus on the decision at hand.

Best wishes, and please share what you discover.

I am a big beliver in the pre-op PSA velocity theory. My own case makes proof of it. At the time of my PC dx, my PSA went to 12.3 from an already high of 5.8 the year before. In the 2 months from dx to surgery, it had further climbed to over 16.

I had open surgery, Stage II, still a Gleason 7. Within 9 months of surgery, I had confirmed recurrance, thus creating the need for SRT

I have had 3 PSA readings since the SRT last November. 1st one went down, 2nd went down to under .1, but the 3rd one, increased by 50%.
We are waiting for my next reading in November. Hoping it stays steady or goes down again, though with my PSA numbers, there is usually no going back down, mine have never trended up and down. If it is up again, then the SRT has failed within a year.

My urolologist said from the beginning, that my PSA velocity was going to be a problem, so far, it is working that way. He said, that a fast velocity case, can be more dangerous than the average Gleason 8-10 case.

BTW, I never had any evidence of any inflamation or infections in my prostate, or any kind of prostate related problems prior to PC dx.

David in SC

pro

my uro discussed both methods with me, but he's a strong believer of waiting to see if recurrance is happening first, because sometimes, even with bad pathology, some men do well for a period of time before ever having recurrance, that extra time helps in dealing with incontinence and ED issues. He also knew, that I had a terrible experience with RT 10 years before for a different type of cancer, and knew that I did not want to undergo any ki
nd of RT unless it was absolutley needed.

because of the velocity, my rad. oncologist only gave it roughly a 20% chance of working, but i took the risk, knowing that the radiation might do a lot of damage to me, and unfortunately, for me, it has. most men here have gone through RT or SRT without too much difficulty, so my situation is not typical.

good luck, i know its a tough decision to make