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Acid Phosphatase

bdhilton
Posts: 759
Joined: Jan 2010

I am part of several studies but was curious as to who had an elevated Acid Phosphatase test prior to treatment? Mine was in normal ranges…many thanks and best to all

mrspjd
Posts: 693
Joined: Apr 2010

PAP stands for prostatic acid phosphatase and if your result was 3 or under that is a good thing (according to Dr. Steven Strum). Rather than try to explain it here, just google PAP and prostatic acid phosphatase, which will give you a better understanding of it than if I tried to explain it. Dr. Steven Strum discusses the importance of this test in his book on PCa, which I recommend (a bit scientific, but a good book for anyone w/PCa). I was privileged to hear Dr. Strum speak (& got to speak w/him personally--I know, bragging...) this weekend at the PCRI Conference on PCa in L.A. that I attended with pjd. Will try to share some info from the conference in a future thread/post when it all has a chance to sink in--but overall, great conference on PCa!

bdhilton
Posts: 759
Joined: Jan 2010

Thank you for the expatiation. Am looking at what guys had for readings, what their clinical and post surgery pathology was and what additional treatment if any they had…thanks

mrspjd
Posts: 693
Joined: Apr 2010

pjd's pre-treatment PAP was under 3. As I'm sure you are aware from reading elsewhere on this forum, he did not elect RP as his primary treatment modality for T3, locally advanced, non-metastatic PCa, so although this info may not answer your question, hopefully it might be useful for others.

bdhilton
Posts: 759
Joined: Jan 2010

Perhaps it would be helpful if you posted his details on the “about me” section. My question was about any treatment results and the PAP score-thanks

mrspjd
Posts: 693
Joined: Apr 2010

Thank you for your suggestion, however, for now, I've intentionally opted not to post those details in the "blog" or "about me" sections of CSN--obviously, this is a very personal decision for each CSN member. (That is also why I don't list "friends.")The "details" you refer to are documented in my many posts on this forum. I'm no expert by any means, however, willing to help & share what I know re T3 locally advanced PCa. As for your questions, pjd is currently in primary tx, so there are no tx results to report/post (except for ADT, which I've previously written about), and I think I've already answered your question about PAP score. The PAP he had did not influence his choice of tx--what did influence his decision was a combination of: multiple doc consults, further testing including a second opinion on his biopsy lab slides from Johns-Hopkins Pathology, Tesla 3 endo-MRI w/Spec, color doppler ultrasound, obtaining and confiming his correct PCa staging, and extensive research on T3 PCa. Hope this helps to answer your questions.

mrsjj
Posts: 2
Joined: Sep 2010

I am new here and like you have a husband with prostate cancer. I have been reading everyone comments and I am thankful that people share their experiences. I find your comments interesting above. You tell bdhilton that his question about your husband and prostate pathology is none of his business and then you ask ob66 today 101 questions about his treatments? I think this site is about sharing information?

mrspjd
Posts: 693
Joined: Apr 2010

I'm sorry your husband has PCa, and from one woman to another, welcome to the forum. With all due respect to your post, I've written over 90 posts, many with all the gory PCa details (including clinical pathology, tx choice, and more), and they are available for you to read, if you so chose, but it is apparent you have not. Perhaps you haven't yet figured out how to do a search or retrieve info on this discussion board or maybe you're unfamilar with what the "My CSN Space-about me/blog" actually is and that it is optional? Your post sounds so angry and hostile...all of us are angry about PCa and the way it has affected our loved ones and our lives. I see you have made only one post as of this date, but shared nothing in relation to your own personal situation other than your very apparent anger. Since you write that sharing info is what this site is about (and I agree), I'm looking forward to reading what it is that you'd like to share about your/your husband's situation with PCa?

mrsjj
Posts: 2
Joined: Sep 2010

I have read most of your postings and I am sorry if this sounds out of line but I do not think you are someone’s wife or even a woman. I am a woman and you do not sound like you are. I am sorry if you are but this is very disturbing to me.

mrspjd
Posts: 693
Joined: Apr 2010

I could say the same thing about you, but I'll give you the benefit of the doubt, and maintain my class by not personally attacking you as you have me. Everyone's entitled to their own opinions, but everyone is not entitled to their own facts. As you indicated in your post, you do seem disturbed. I'm still looking forward to reading your future post which would share information about your/your significant other's personal situation with PCa (which I doubt we will ever see), because until now, you have only shared your hostility.

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Kongo
Posts: 1167
Joined: Mar 2010

Mrs,

As I understand it, the PAP was the prevelant test before PSA was developed and has pretty much been replaced by PSA as a potential PCa precursor. The PAP can flucuate significantly over a single day and is not as accurate as PSA (which has its own issues about accuracy). From what I have read, PAP today is really only relevant as a possible indicator of metastasis before there are other symptoms or evidence from bone scans, chest x-rays, or other blood panel work and is used to help guide treatment decisons. From the information you've gathered, is that a correct interpretation or is there some other use for PAP that I don't know about.

BD: I wonder what study you are in that tracks PAP, how often is it taken, and what do they use it for? Are there levels which would trigger additional treatment?

mrspjd
Posts: 693
Joined: Apr 2010

You're pretty much on target. According to Dr. Stephen B. Strum who wrote "A Primer on Prostate Cancer, The Empowered Patient's Guide," and as recently as this weekend at the PCRI Conference, Strum emphasized the importance of the pre tx PAP blood test as an indicator of PCa disease. PAP was the standard prior to PSA and there is some disagreement in the medical community, however, Strum still believes, since PSA is not aways the best predictor of PCa, that the PAP can be just as important. In pjd's case, PSA was never a red flag for PCa since there was no rapid PSA doubling or PSA read higher than 2.4. Quoting directly from Strum's book "PAP prostatic acid phosphatase - an enzyme or biomarker secreted by prostate cells associated with a higher probability of disease outside the prostate when pre-tx levels are 3.0 or higher. PAP elevations of this degree connote that the disease is not OCD (organ confined disease)." The keyword here being "probability."

The PAP test is not randomly offered and most docs will say, as pjd's doc at the time said, that it's not beneifical, but pjd insisted because his biopsy indicated PNI, and the doc ordered it (you've got to be your own advocate). It's a simple blood test, could easily be part of a blood panel that also includes PSA, and I believe the test was covered by our insurance.

bdhilton
Posts: 759
Joined: Jan 2010

I was asked and accepted to be in several studies with Northwestern. There is no study that I am in that is about PAP (I do not believe you produce it after prostate is removed) I was just curious to what PAP scores guys had pre treatment and post treatment and if they had second line treatment if they had above normal scores… thanks for asking

hopeful and opt...
Posts: 1357
Joined: Apr 2009

at the Orange County Prostate Forum in Fullerton.....this organization generally records the presentation made, and the Dvd's are available for rental.

I also read Dr. Strum's book, a few times over. It was very technical, and a lot of it went over my head, but I learned a lot from the parts that I understood. I believe that this book is best used as a reference ....This book is probably the most informative that I have read...I think that it's time to reread the book. Since I had lent the book I need to buy or relend.

If I remember correctly , Dr. Strum is now retired, and volunteers his time on prostate site, I think but not sure that it is PCRI.....please validate or correct this information.

Ira

mrspjd
Posts: 693
Joined: Apr 2010

Ira,
My understanding is that Dr. Strum is semi-retired and no longer accepts new patients. He is still very active in PCa research with doctors world wide. Strum is an extremely vocal advocate for PCa in many areas, including trying to get new legislation passed pertaining to how men should be counseled PRIOR to making tx decisions; and working with other well-known medical professionals in order to get the FDA to "fast-track" new PCa drugs that have shown promise, now especially, Abiraterone. He has been known, at times, to be a physician contributor on P2P (Physician to Patient). The Us Too website as well as the following link may give you more info: http://www.prostatepointers.org/mlist/mlist.html

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I certainly agree with any effort to upgrade and standardize required counseling prior to receiving treatment. Although every treatment in the USA requires "informed consent" that generally means the doctor has to advise you about potential side effects and other options, I know from my own experience and from those of other men I have met with personally or corresponded with that there is a wide, wide variation on how that information is delivered.

For example, one oncologist, when I asked him about potential penile atrophy with RP or radiation treatment said glibly.."sure, there is always 'some risk' but you have plenty to spare." I realized he was trying to make light of a subject near and dear to men but I didn't appreciate it and ended up being put off by his other suggestions just because of that one comment.

In general I think I received fairly comprehensive overviews from the six professionals I consulted with but in all but two cases, I had to press really hard for them to elaborate on side effects that I had already read about. If I hadn't done my homework before hand, I would have come away dazed and confused.

It's a complicated subject. I think some men really don't want to know...they just want it taken care of and are willing to follow their doctor's advice and no matter how much you try to standardize the pre treatment counseling, there is going to be a fairly large percentage of men who either don't want to hear it, or don't have the background to understand what they're being told.

This may be heritical to say, but if I was going to create my perfect cancer (as bad as that alone may be), I think PCa pretty much fits the mold. Most men, even men with advanced stages, do not die from this disease. When you compare what we go through (and I realize its pretty grim for many of us given the side effects of some of the treatments we have received) compared to a woman with breast cancer or a person with pancreatic or lung cancer...we come out pretty good overall. If I had to have a cancer, I am glad I had this one. Having said that, and please forgive me if I have offended anyone truly suffering from the effects of this disease and I'm certainly not implying that what we have isn't "real" cancer as discussed in an earlier thread a few months ago.

The complexity of this disease, the many nuances surrounding PSA, PAP, Gleason, sexual potency, testosterone, biopsies, DREs, and so forth and the wide variety of treatments along with the constant hard sells we are exposed to from across the spectrum of the professional medical community, conflicting medical studies, contradictory advice from "experts," all conspire to make this extremely difficult for us to assess rationally. All too often I believe too many men end up making emotional rather than rational decisions about how to deal with their diagnosis.

I don't think the FDA is doing us too many favors either. But that's a whole other topic.

Sorry for straying off thread.

bdhilton
Posts: 759
Joined: Jan 2010

I totally agree that the FDA, America Medical Association and various “non-profit” cancer groups are not doing us too many favors…At the end of the rainbow it is all about the almighty dollar not us…It is tragic that we have to take the position of “caveat emptor”…

However, this cancer has 24 varieties and is deadly for many men with a fast and painful death too... Give often to the Prostate Cancer Foundation (the most active one out there for all of us with Prostate Cancers)…Best to all

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I do agree with BD that the financial aspects of this disease is a real turnoff for those of us who have suffered it. On the other hand, without the potential for making a buck off our prostates we probably would not have all the advances we have seen in recent years.

It's a double-edged sword for sure.

mrspjd
Posts: 693
Joined: Apr 2010

During the PCRI Conf on PCa this past weekend, Dr. Scholz, on behalf of PCRI presented a $10,000 donation to PCF (Prostate Cancer Foundation). Accepting on behalf of PCF was JONATHAN W. SIMONS, MD, PCF President and Chief Executive Officer.

bdhilton
Posts: 759
Joined: Jan 2010

Happy to hear about the generous donation-thanks

mrspjd
Posts: 693
Joined: Apr 2010

Thought you'd appreciate the info as I know how important it is.

Beau2
Posts: 245
Joined: Sep 2010

FYI

Prostate Cancer will kill 32,000 men in the US this year. It is the second largest killer of men of all of the types of cancer.

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