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I Need Understanding With My Results

Sw1218's picture
Sw1218
Posts: 55
Joined: Jan 2016

Hello, everybody! HAPPY NEW YEAR!!Cool

Thursday, I went to have a free/total PSA blood drawn. Yesterday I received the results. I'm not ashamed to say that I am scared and confused. Before I share with you my results, let me tell you about myself. My name is Samuel. On December 18, 2015, I turned 42 years old. About six months after I turned 40, I went in for my annual checkup. My PSA came back a 5.5 and so I was recommended a biopsy. 

The results were BPH and asymptomatic inflammatory prostatitis, along with four areas of irritation/inflammation. He said there was no cancer seen. My urologist also said there was one area at the right base of atypical small acinar proliferation [ASAP] that favored benign. So, he recommended holding off on a repeat biopsy and to just follow PSA. 

In July of 2015, I had another PSA done and that came back, 5.9. My Urologist said because of my BPH and prostatitis, that is to be expected. So he recommended a free-PSA and total PSA in six months. Well, Thursday, I had the free-PSA and total PSA. Here are the results. Please provide me with any help you can. Thank you in advance.

PSA still high, with concerning free-fraction, making risk of having prostate cancer around 56% (normal risk with high PSA is arounf 30%). But you had inflammation on last biopsy, so the slightly higher PSA could easily come from that inflammation.
   
There is another test performed on post-prostate massage urine sample that measures gene expression called PCA3 test. If the gene expression is low, the 75% negative predictive value that you do not have prostate cancer. If it is abnormal, then the 57% postive predictive value that you do have something. Thus, it is much better at reassuring us that there is nothing concerning there when negative, and sparing you from another biopsy. The PCA3 test is FDA approved, but insurance does not reimburse enough to cover the test, so patients are directly billed $175 for it. For most men, that price is worth it to avoid another biopsy. If you want to have that done, make an appointment for RV (return visit) and we can get that done quickly.
   
If the PCA3 test is positive, then I would recommend getting a multiparametric MR of the prostate which can identify suspicious areas for biopsy. We then would fuse the MR images with a 3-dimensional prostate ultrasound to get targeted biopsies of those suspicious areas rather than the 12 "template" biopsies with standard prostate sampling.
   
You could skip the PCA3 test and go to the multiparametric MR if you were concerned about the cost of the PCA3, but I think it is worth the price to avoid another biopsy if possible.''
   
   
Results:
Date
Result Name
Value
Ref Range
1/14/2016 15:44
Prostate Specific Antigen
7.66 ng/mL
(0.00 - 4.00)
1/14/2016 15:44
Free Prostate Specific Antigen
0.67 ng/mL
   
1/14/2016 15:44
Prostate Specific Antigen Ratio
8.7 %
hopeful and opt...
Posts: 2226
Joined: Apr 2009

 

Samuel,

Although you have not been diagnosed with prostate cancer, you feel threatened, and are having  those depressive feelings that those of us who have been diagnosed exeperience that usually last for a few months.

 

The PSA is an indicator only, and is affected not only by infection, but by activities before the biopsy such as sex, bike riding, other activities, hard stool. Additionally the PSA is elevated by having a large prostate which can lay on the uretha and elevate the PSA.

There is  a ratio that you might look at between the size of your prostate and the PSA.........an estimate of your prostate size has been noted at your biopsy........you want the ratio to be 0.15 or less.     If you receive an MRI , it will be a more exact description of you prostate size.

I wonder if you have engaged in any of these activities, especially before your last biopsy.

Some docs treat for infection in order to see if the PSA is lowered.

Your free PSA ratio is 8.7%. This is of concern, since the higher the better.

 

At this point you obviously want to know where you stand.

Your doctor has mentioned having an MRI guided three dimension biopsy........this is the state of the art in biopsies........I , personally have had four of these biopsies......that give a lot more confidence in results than the typical biopsy...........there are only a  few institutions that perform this, generally at  major centers of excellence.

The PCA3 is a urine assay test that is an indicator only.....it is another piece of the puzzle.

I don't know your financial ability, but I would do both the PCA3 and the MRI guided biopsy.........or I would do the mri/ biopsy only.

Feel free to click my name at the right to see what I have been doing in the Active Surveillance protocol that I am following.

It's important for you to aquire knowledge.....read books, attend local prostate cancer support groups........ask questions here..........we are here for you.

Best

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

More information is what you need and, in your situation, here's what I'd do:

1) I'd submit my biospy slides to Johns Hopkins for a 2nd opinion with special attention to the area noted in the initial biopsy.  Dr. Jonathan Epstein is a recogizned expert in rendering PCa 2nd opinions and I'd ask that he do the reanalysis.  He did the 2nd opinion on mine. Here are links to the 2nd Opinion Service and some info regarding Dr. Epstein:

http://pathology.jhu.edu/department/services/secondopinion.cfm

http://www.hopkinsmedicine.org/hmn/F02/feature2.html

2) As recommended, I'd get the PCA3 test done.  It's a genetic based test which can give you a better indication of whether you have PCa or not but, as noted in your report, it's negative predictive value is only 75%, which means there might be a 25% chance that you still have PCa even given a negative PCA3 result.  For $175, this is a small price to pay for the additional info that it will provide.

3) As also recommended, if the 2nd Opinion and/or PCA3 is positive, I'd get the multiparametric MRI done.  This is a combined MRI/MRSI scan using a contract agent which detects the presence of cholie (a marker for cancer) in or near the prostate.   Normally, this test is only done when there is a postive biospy result or fear of recurrance. 

I had this test done when there was a concern of recurrence during my treatment.  This is the only test that will tell you for certain whether there is any cancer or not but your insurer may be unwilling to pay for it w/o any positive indication of PCa. 

Here's some info about the scan: http://www.radiology.ucsf.edu/patient-care/services/prostate-exam-study#accordion-metabolic-imaging

4) If the 2nd opinion and PCA3 test is negative and your insurer will not authorize a multiparametric MRI, all you can do (unless you can afford to pay for the MRI out of pocket) is to continue to monitor your PSA level.  If you are concerned, I'd ask your doctor to authorize quarterly (instead of semianual) testing which will give you better warning or any significant increases in PSA levels that would warrant taking another biopsy.

Good luck!

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Samuel,

Welcome to the board.

You got good advices from the survivors above. Obtaining a second opinion/review on the data at your possession is important.

In any case, having prostate cancer at your age is rare but possible (it exists) so that you doing well to investigate in detail your status. The three PSA tests done are all above what it is considered normal for a 42 years old man. However, as Hopeful comments high values can be related to causes other than cancer. I wonder if your doctor has recommended you any anti-inflammatory/antibiotic protocol before the biopsy, or along the period he is monitoring your status.

I also would like to know if he has performed a DRE (digital rectum examination) before drawing blood for the PSA test. This occurrence is rare but some inexperienced GP do DRE and then draw blood in the same day. Many of us also engage in physical practices that affect/massage/squeeze the prostate (Sex, riding a horse/bike, etc, done in the previous 24 hours period) which directly will cause an increase of the PSA. But, I may rule out such possibility because it would have occurred in the three occasions you tested.

The initial diagnosis of positive “BPH and asymptomatic inflammatory prostatitis” is valid to signify a higher PSA (above normal 4.0 ng/ml). This status could be verified through a PSA test done after administration of an anti-inflammatory/antibiotic protocol (one month) that would treat the infection, if any. Typically chronic benign status is represented in a “saw” pattern graphic (high and low results in a series) of PSA tests. Constant increases represent more a case of cancer. Quarterly or every 3-months PSAs will provide you a more reliable chart. These analyses should be done at the same laboratory (different assays may provide different results).

At present the data you provide is suspicious of cancer. The only way to be certain in future will be in engaging in additional biopsies. The newer techniques in MRIs may help but would only be suggestive of the results.

I would recommend you to educate more about the disease and about the ways to treat it. In particular in regards to the risks that such procedure involves (biopsies, medications, radical therapies, etc). Young patients should be more careful because it affects their whole life and dependents. One may lose the possibility in fathering a child. We all freak out when confronted with a high PSA but we should keep “cool” and a positive attitude to handle the situation.

So far you have not been diagnosed with cancer. Try controlling the infection and BPH.

Best wishes.

VGama

Sw1218's picture
Sw1218
Posts: 55
Joined: Jan 2016

hello, VGama.

i must admit some of the wording you used i didn't quite understand. but, i will answer the questions you asked

1. no, after finding prostatitis and BPH in 2014, there was no recommendations made. the uro simply stated that he was to find reason for the 5.5 PSA.

2. my primary doctor did not perform a DRE before having blood drawn. when i was referred to my urologist,  however, he performed a DRE and didn't find anything. so, he recommended a biopsy. this was all done in 2014. in 2015, i visited my primary doctor, but no DRE was performed, but blood drawn to test my PSA. the results came back 5.9. my uro said because of BPH and inflammatioon, that was to be expected. so, he ordered a fpsa in six months, which was this past thursday.

are you saying i should ask the doctor for some type of antibiotics to treat the inflammed areas and bph?

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3308
Joined: May 2012

SW,

You are learning fast, and asking the right questions. 

Prostate biopsies are known for frequent false negative results; just too little tissue is removed to cover all areas inside the gland where a tiny tumor might be active. MOST biopsies are accurate, but a high enough percentage are false negative to be problematic.  With a personal background in lymphoma before I got prostate cancer, one of the things that struck me about PCa (prostate cancer) is how difficult it is to locate. Although improved forms of imaging now better spot tiny PCa tumors, the imaging in this area is poor compared to most other forms of cancer. And metastatic prostate disease is virtually impossible to track down, at least until tumors become so large as to be painful in the bone, or other locations.  The "gold standards" for viewing lymphoma: the CT and PET scans, are not much used in PCa treatment.

The DRE is of value, but quite limited:  It will tell the doctor if the rear half of the gland has sensible tumors, but tells them nothing about the front half of the gland. So a negative DRE in essence suggests that half of the gland is tumor-free.  

The doctor is correct (of course) that BPH and inflammation could well be the cause of your PSA levels.  I had BHP and chronic prostatitis for years before I got the PCa diagnosis.  In fact, both my biopsy and the pathology report following my prostectomy mentioned, "Chronic inflammatory tissue."  This tissue is usually non-cancerous, but routinely co-exists with cancerous tissue; it is not an issue of one or the other, but possibly both. And to further confuse the issue, many forms of chronic prostatitis, which can persist in a man for decades (it did in me), are non-bacterial, and will not improve on Cipro or other antibiotics. I wish I had a dollar for every 'Cipro Pack' I was given over the years.

I have not read a lot about secondary studies of a biopsy, but do what the guys suggested and have it sent to a better lab. The cost is relatively cheap compared to the other stuff men have done in cancer treatment.   Ask the necessary insurance coverage questions first, however. Pay out of pocket if necessary, if you can afford it.  No good doctor objects to second opinions in these matters.

More important than an absolute or static PSA number is how it is changing, and how fast. This is called yor PSA doubling rate or vector. A faster rate of increase is worse than a slow increasing or static number.

Most men in the US are diagnosed with PCa at the age of 68.  You are quite young for a PSA of over 5, even with inflammation.  The following statement is IMPRESSIONISTIC, and I have no statistics to back it, but some writers suggest that PCA occuring in quite young men (guys in their early 40s or younger) tend toward more aggressive disease.  My cousin's brother-in -law was lost to the disease in his 40s, despite getting his care at M.D. Anderson in Houston, one of the best facilities in the world.  You will hear it said that "PCa is very indolent (slow-moving)."  That is correct, except for the rare cases when it isn't. You will hear, "Men die with PCa, not from it."  True, except when they die from it, and many thousands die from it in the US every year.   Two of my dear friends died from it in the last 7 years, not counting the cousin's relative.  Address prostate issues calmly, intelligently, but with force.

I do not say any of the above to frighten you, and quite likely you do not have PCa.  But I would absolutely demand a PSA every three months until this is figured out -- a very small price to pay to monitor things.

My layman's take of your numbers,

max

Sw1218's picture
Sw1218
Posts: 55
Joined: Jan 2016

Thank you, Max. Yes, some of the things you wrote did frighten me a bit. However, what you wrote also had me wondering, if [generally speaking] men my age [42] do in fact have PC, you wrote the tumors would be aggressive. I'm not noticing any symptoms at all what so ever. So, could that mean I don't have it, or am I one of the exceptions? 

Tomorrow, I will reach out to my urologist and ask him some questions 'bout the options he presented to me over email, and ask about the insurance of both. Also, I may look into getting another opinion as well as ask to treat the inflammatioon then test the PSA. My inflammation was never treated.

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Samuel,

Most times there are no symptoms with early diagnosed prostate cancer.  

As you are probably aware, prostate cancer diagnosis have different levels of aggressiveness. So in your case, even if you are diagnosed with prostate cancer (which you have NOT been) it may be indolent, that is not likely to spread. In fact where I am treated there is a man who was diagnosed in his early 30's about 10 years ago, and has an indolent cancer. He is enrolled in an active surveilance protocol, that is being closely monitored, and is going on with his life.

As discussed you may have an inflamation, that may be treated with a month of cipro or another drug. The downside to this treatment is that you can develop an immunity to the drug.

When you say another opinion, are you referring to a second opinion of the pathology of your biopsy by a world class pathologist.. Determining results of these biopsies are subjective, so the need for a world class pathologist that specializes.

Sw1218's picture
Sw1218
Posts: 55
Joined: Jan 2016

I wish I knew a world class pathologist. No, I was going to make an appointment with another urologist, show him/her my history since 2014, and decide where to go from there. This was just a thought.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

swingshiftworker recommended a world class pathologist to you,

") I'd submit my biospy slides to Johns Hopkins for a 2nd opinion with special attention to the area noted in the initial biopsy.  Dr. Jonathan Epstein is a recogizned expert in rendering PCa 2nd opinions and I'd ask that he do the reanalysis.  He did the 2nd opinion on mine. Here are links to the 2nd Opinion Service and some info regarding Dr. Epstein:

http://pathology.jhu.edu/department/services/secondopinion.cfm

http://www.hopkinsmedicine.org/hmn/F02/feature2.html"

 

You can always seek another opinion by a urologist.--I personally would contact my current urologist at this time for more discussion.

 I wonder if the urologist that you are seeing is associated with a center of excellence such as UCLA or NYU. Both of these institutions offer MRI guided biopsies using three dimensional ultrasounds----Samuel, this is a very big deal, probably less than 1/2 of 1  percent of urologists have this capability. ONe of the benefits of this biopsy is that you will have more confidence with the results, and another benefit is,  if there is a spot that is suspicious, you can target, that is, go back to the area of the spot that is suspicious in a follow-up biopsy. You cannot do  this with the standard  two dimensional biopsy that most urologists only have available.

 

Basically the critical information for type of treatment, or non treatment is the biopsy..........using the MRI guided biopsy is the state of the art................the best.

 

 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Samuel

Sorry if my comments were too specific. Please ask whenever you want. Though, I believe that you got the meaning from the others posts.

Surely I would recommend you to inquire about treating any inflammation before proceeding with any other test. Meanwhile you can get a second opinion on the initial biopsy slides. You can request your doctor to send them directly to a renowned pathologist laboratory or you may do it via DHL (courier). You can also investigate about places with the right facilities for your continuing monitoring.
It may seem that the guys here are asking too much for you doing but we are real. You may have no cancer but you need to be cautious. You need to involve your family in the discussions.
Can you tell us if you have any male in the family (grandfather, father, brother, uncle, etc) that has been diagnosed with PCa or BHP?

One warning note goes to the costs required to all procedures (testing, image study exams, biopsies, and treatments, etc) when one is stricken with the possibility in having prostate cancer. Insurances will not accept a patient once diagnosed. You need to get coverage now before continuing with any procedure.
Choose a company that covers “special” diagnosis procedures and treatments (such as; Gene profile, guided biopsy, C11 PET, MRIs, SK, nerve-spare RP, etc).

Best.

VG

Sw1218's picture
Sw1218
Posts: 55
Joined: Jan 2016

no family members thhat i am aware of that have been diagnosed with any prostate issues. i have medical insurance. i'm still asking around, because i haven't spoken to my uro, yet. i am thinking of having the 3t mri done. i guess a question i have is low free psa in line with inflammation?  

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Ihope that the following will be helpful, and add to VG's reply. Also the PCA3 that you can have will give input for your decision to biopsy.

Free PSA Test Helps in Prostate Cancer Diagnosis
by William J. Catalona, M.D.

 

A relatively new and helpful addition in the diagnosis of prostate cancer is the free PSA Test.

This blood test is done in addition to the PSA Test and the finger (digital) examination.

The PSA Test measures a protein in the blood that is produced only by the prostate gland. Some of the PSA in blood is bound to other proteins and the rest circulates freely. This free PSA is a damaged variant of PSA that no longer is able to bind to other proteins and thus circulates in the blood in the unbound (free) form.

For reasons that are not yet known, patients with cancer have less free PSA than patients with benign prostate conditions which can also raise the total PSA level.

The standard PSA test measures both components of PSA: free and protein bound. The free PSA blood test measures only the unbound (or damaged) type of PSA, called the free PSA.

Until recently, the usual PSA threshold used to recommend a biopsy has been 4.0 nanograms per milliliter.

This standard approach not only misses 20% of prostate cancers, but also can raise false alarms.

In fact, only about 25 to 35% of elevated PSA levels are actually caused by cancer; benign enlargement or inflammation within the prostate cause the rest.

Dr. Catalona and other investigators have shown that lowering the PSA threshold for recommending a biopsy to 2.5 identifies about 20% more cancers, but also increases the number of biopsies that must be performed.

Looking at the ratio of free PSA to total PSA level in the blood helps the patient to decide about having a biopsy when the total PSA level is mildly elevated (2.6 to 10).

The percentage of free PSA can be used to estimate how likely it is that a biopsy will show cancer:

If the percentage of free PSA is higher than 25%, the likelihood of prostate cancer is about 8%.

If the percentage of free PSA is less than 10%, then the likelihood of prostate cancer rises to 56%.

The use of free PSA measurements can cut back on the number of unnecessary biopsies by about 20 percent, while missing only about 5% of the cancers. Also, some evidence suggests that the missed cancers are usually the least aggressive ones.

The protocol for the PSA study, with which investigators must comply, states that all men whose PSA level is 2.6 or higher should undergo a biopsy; however, the patient may decide to waive the biopsy.

That protocol also states that the public must be informed of the results that the likelihood of the biopsy showing prostate cancer is very low (only 8%) if the per cent of free PSA is higher than 25%.

Men may choose to use this information from the free PSA to decide whether or not to have a biopsy.

If they choose not to have the biopsy, they are taking a small risk that they will be missing or delaying the detection of prostate cancer. If they are willing to accept this risk, they can avoid the biopsy.

Also, and perhaps more important, the free PSA test can clarify the results when a biopsy fails to find cancer even though the total PSA level is elevated.

In that case, it is possible that the biopsy simply missed the cancer.

A low percentage of free PSA may warrant repeating the biopsy, while a higher percentage of free PSA would tend to strengthen the negative result.

 

 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Hi again,

Inflammation would alter the level of the PSA bounded or not (free) to proteins. In other words, if you have an inflammation you may expect having high levels of both serums, wich would lead to think that the percentage (value) between these should not alter, but nobody could trust in "masked" values.

Surely you need to consider that your chronic prostatitis may render your PSA absolete in any judgement of your status.

Best,

VG

Sw1218's picture
Sw1218
Posts: 55
Joined: Jan 2016

i spoke with my uro today. i think i will have the mutli-parametric MRI. i guess what frightens me the most is the thought of dying from PC. my uro says, ''nothing short of a biopsy can tell if i have PC.'' but based of the numbers its more than a fifty percent chance that i do. so that scares me. 

VascodaGama's picture
VascodaGama
Posts: 3029
Joined: Nov 2010

Samuel

When we hear the word “Cancer” we think we are close to death. You and I and the many in this forum experienced that fear. However, prostate cancer is not something that spreads overnight to incapacitate us to such extent that we die.

Firstly, you have not been diagnosed with the disease in your initial biopsy and the data causing you the worries is not trustful. The PSA and the percentage free PSA cannot be used as a statistical measurement to confirm your status. In the future, a guided-biopsy may reveal your real status. Until then you should monitor the problem and enjoy life as usual.

The MRI (multiparametric) will also add information with a better “picture” (a close look) of your prostate gland. It cannot differentiate between benign tissue and cancerous but it can distinguish particulars which when fused with other information (from several ways/pulse-sequences construing the image, including sort of colour Doppler) manages to pinpoint problems that comparing with past experiences, it provide an answer close to a proper diagnosis.
In fact doctors make use of it to attribute a clinical stage to a patient.
In the site of UCSF (prostate cancer specialists) they comment this;

“Multi-parametric MRI prostate cancer imaging exams are performed after a biopsy-proven diagnosis of prostate cancer to provide patients with more detailed information about their disease…”

Here is the link:

https://radiology.ucsf.edu/patient-care/services/prostate-exam-study#accordion-dynamic-contrast-enhanced-(dce)-mri

 

I sense stress. How about going for that trip you wanted so much to accomplish in the past.

Best wishes,

VG

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

As I understand Samual will be having MRI guided biopsy,so he will have a very good idea of where he stands.

" I would recommend getting a multiparametric MR of the prostate which can identify suspicious areas for biopsy. We then would fuse the MR images with a 3-dimensional prostate ultrasound to get targeted biopsies of those suspicious areas rather than the 12 "template" biopsies with standard prostate sampling."

Samuel, VG is right, you have not been  diagnosed with PC. ......I know that it's stressful before a biopsy. I have had five of them; four of them have been MRI guided. I am going for another one in about nine months. You will be OK.

There are coping skills. One is to develop knowledge as you are doing. Another is to be with upbeat people, so for example if you attend religious services, do it with an upbeat clergyman----everybody needs to be upbeat in your life....Also do service for others, this helps.....In life, focus on the donut, not the hole.

Samuel, by the way where do you live....it may be that one of us posters may live in , or know about medical services in your area,  and can give advise specific to your geographic area.

YOU WILL DO FINE.

h

   
Sw1218's picture
Sw1218
Posts: 55
Joined: Jan 2016

hello, h.

i live in atlanta, ga. my urologist is dr. peter nieh, md. if anybody knows a good urologist who accepts medicaid, please tell me.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

U.S. News and Report publishes an annual hospital ranking be specialty

Emory is ranked 22 for urology

http://health.usnews.com/best-hospitals/rankings/urology?page=3

and, also 22 fdr adult cancer

http://health.usnews.com/best-hospitals/rankings/cancer?page=3

Sw1218's picture
Sw1218
Posts: 55
Joined: Jan 2016

Emory, may be a top 20 hosp. for urology, but a have a urologist who does not have a good bedside manner. so, i'm changing urologists and going with some1 else.

Sw1218's picture
Sw1218
Posts: 55
Joined: Jan 2016

thank you so much, vascoda, for the kind, encouraging words

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