CONFLICTING PROSTATE CANCER PATHOLOGY FINDINGS

 I was diagnosed in January with PC.  PSA 1.5.   No palpable tumor-Gleason score of 3+3=6 .  1 core out of 12 had a 10% or less cancer infiltration.  Reason for biopsy, blood in my semen.  I went to Cleveland Clinic. They reviewed my slides and said I had atypical cells but couldn't diagnose cancer.  I already had an appointment to talk to Loma Linda and took my slides to them.  They came back with my original diagnosis of prostate cancer with a Gleason of 3+3=6.  Now I'm really confused, so I send my slides to Dr.Epstein at Johns Hopkins.  He came back with the same diagnosis as the Cleveland Clinic... Atypical cells but not diagnostic of cancer recommending another biopsy which I've scheduled at Cleveland Clinic on Monday April 2.  I'm also scheduled to start treatment at Loma Linda on April 10th.   Even with a negative biopsy I'm told I could still have cancer because 20% to 25% of cancers are missed.  SO WHAT DO I DO??????????????????  My PSA has gone from 0.5 about 18 months ago, to 1.53 in January and now is at 1.66.  It was 2.02 when checked at Loma Linda 2 weeks ago.  I sent my results that I received from Johns Hopkins to Loma Linda but Dr. Bush is standing by his original recommendation of starting treatment.  Dr Epstein says I should not start any treatment until I get a definitive diagnosis of Cancer.  Am I better off canceling the treatment if the biopsy comes back negative... or going for treatment, even though there is a chance that I may not have Cancer?  I am so confused, frustrated and totally drained.  This whole ordeal has been unbelievable.  Any advice anyone can give me is appreciated. 

Jim -Thank you for your reply-I'm anxiously waiting for any and all replies-Thanks-Tom

Hi Teb
I agree with Tony's advice. You sound like you are in panic mode right now. When you feel like that it is not a good time to make life altering decisions. Most prostate cancer is very slow developing. My Gleason was rather high (4+4=8), but the doctors said it changed very little over a half year period. I went from June to the following January without further complication

You are getting conflicting diagnosis from different doctors. You need to stop and slow down, wait and continue to gather information. It must be a very difficult time for you. Nothing I can say will change that.

I am surprised that Loma Linda would even consider beginning treatment in view of the lack of medical agreement.
You might not even have prostate cancer.

Teb:

I also agree that you need a more definitive answer and that to rush to treatment might not be in your best interest right now.  Would a "free" PSA be of any help at this point? 

Take a deep breath and take care.

Dutch

Dutch, I had a free PSA done... it came back 0.2

Teb:

I have never seen "free" PSA's in any other form than % - I have read that under 19% indicates presence of cancer.

My BIL is going thru the same thing right now and it is very nerve wracking.

Dutch

Hi Teb

I don't envy your situation, but don't panic yet. Dr. Epstein is considered at the top of the list of expert patholigists. I suggest that you get another biopsy in a reasonable period of time and have them extend it beyond 12 samples of the prostate. i had 29 samples and i really don't believe that 12 is enough. having fewer samples can result in a false negative biopsy. from what i have read, 20 would be a more likely minimum.

you say you have a free PSA of .20--what does that mean? are you saying 20%? i have never heard of a free PSA defined that way. I had a free PSA of 27% at the time of my biopsy, which gave me a risk of about 18% of having prostate cancer, but unfortunately I ended up in the prostate cancer group. The lower the percentage of free PSA, the greater the risk of having prostate cancer (i.e., generally below 25%). You need to clarily your free PSA statistic.

Chances are that you are still in an earlier stage of PC based on your statistics, especially the low PSA. I would not get treatment until you have clarified your situation which is essentially what Dr. Epstein is saying. Get that 2nd biopsy as soon as medically feasible after the 1st biopsy--I believe that they generally prefer not to do another biopsy too soon after the first one. If you are ultimately found to have PC and are in an early stage, being treated with proton therapy may work well for you--that is what I decided for my treatment. Best of luck to you!

Dave

This is quoted from an article on Free PSA
http://psa-rising.com/prostatecancer/fpsa-flowchart.htm

High free PSA -- above 25% -- usually indicates BPH (benign prostate hyperplasia).

Low free PSA likely signals prostate cancer. Most men with prostate cancer have a free PSA below 15%.

If free PSA is below 7%, prostrate cancer is most likely. According to American Cancer Society and National Cancer Institute, men with free PSA at 7% or lower should undergo biopsy. If biopsy is negative but free PSA remains low, repeat biopsy is in order.

I found a recent study on the basis for a 2nd prostate biopsy that may be of interest to you. I don't know to what degree it fits you situation, but I think you should read it.
http://www.sciencedaily.com/releases/2007/02/070222155514.htm

You might also want to refer to these websites for more information on prostate biopsies:

http://jco.ascopubs.org/cgi/content/full/18/6/1161

This is being quoted from the American Cancer Society
http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_prostate_cancer_diagnosed_36.asp?sitearea=

"Suspicious" Results

Sometimes when the pathologist looks at the prostate cells under the microscope, they don’t look cancerous, but they’re not quite normal, either. These results are often reported as "suspicious." They generally fall into 2 categories -- either "atypical" or "prostatic intraepithelial neoplasia" (PIN).

PIN is often divided into low grade and high grade. Many men begin to develop low-grade PIN at an early age and do not necessarily develop prostate cancer. The importance of low-grade PIN in relation to prostate cancer is still unclear.

With atypical findings or high-grade PIN, cancer may already be present somewhere else in the prostate gland. When high-grade PIN is found, there is a 30% to 50% chance of finding prostate cancer on a later biopsy. For this reason, repeat prostate biopsies are often recommended in these cases.

Revised: 07/26/2006

Hi Teb (Tom)

Glad to be of help where I can! Glad to hear you are going to the Cleveland Clinic for your 2nd biopsy and PSA tests (including free PSA). The Cleveland Clinic has a fine reputation. I can find nothing which expresses free PSA in other than a percentage. You doctor tells you that your free PSA is 0.2 and says it is normal. It tells you and me nothing. See tables below which predict the chances of PC based on PSA and free PSA levels. PSA is certainly expressed as 0.2 which usually relates to those patients whose prostate has been removed or who have had radiation treatment (essentially the PSA is supposed to drop close to -0- after treatment if there is no remaining cancer). with radiation, 0.2 is considered the low nadir indicating that there is no cancer (at least at the time of the test).

http://www.diagnosis.prostate-help.org/pcpsaid.htm
Free PSA and PSA chance of disease
Probability of Cancer based on PSA and % FPSA (Free PSA) results (men with non-suspicious DRE results, any age): % FPSA can stratify risk for men with PSA between 4 and 10 ng/ml.

PSA_ Probability of Cancer
0-2 ng/ml______1%
2-4 ng/ml______15%
4-10 ng/ml_____25%
>10 ng/ml______>50%

%FreePSA Probability of Cancer
0-10%_________56%
10-15%________28%
15-20%________20%
20-25%________16%
>25%__________8% The original of this was presented in the JAMA 279:1543, 1998

Again, my PSA was under 10 and my free PSA was 27%--I was one of the unlucky ones considering that my chances of getting PC were statistically smaller than others.

Deferring your treatment until you get definitive confirmation that you have PC makes sense. Just remember that any kind of treatment, including proton which is considered a safer form of radiation treatment, will have ultimate side effects that can affect the quality of your life. For most patients in an earlier stage of PC, the cancer is slow growing and you usually have a window of opportunity of a few months before the need to start treatment ( at least that is the opinion of some of the experts from what i have read).

Good luck on your biopsy and PSA tests. Looking forward to hearing good news after your tests on April 2,

Dave

P.S. I am in the process of being treated at MGH (Massachusetts General Hospital) Proton Center in Boston. It is the closest proton center to where I live. I didn't want to travel 3000 miles to Loma Linda. I have no reason to believe that my treatment is not comparable to Loma Linda. The radiation oncologist who is directing my treatment is considered among the best in his field. It has only been recently that other proton centers have been opening for treatment of many kinds of cancers, including prostate. So Loma Linda is no longer the only option for proton treatment of PC.