CONFLICTING PROSTATE CANCER PATHOLOGY FINDINGS

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teb829
New Member


Date Joined Feb 2007
Total Posts : 10
   Posted 3/28/2007 7:55 PM (GMT -7)   
 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. 

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 3/28/2007 8:12 PM (GMT -7)   
Hey Teb,

I am no expert on diagnosis so I won't comment on what you should do except to tell you to stay with us here on the forum. Others will pitch in with advice, encouragement and support. I agree that your ordeal has been "unbelievable" but let us help...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
 "Cancer feeds on fear - starve it to death."


teb829
New Member


Date Joined Feb 2007
Total Posts : 10
   Posted 3/28/2007 8:18 PM (GMT -7)   
Jim -Thank you for your reply-I'm anxiously waiting for any and all replies-Thanks-Tom

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 3/28/2007 8:36 PM (GMT -7)   
Hi Teb.
This is what I would do.
If I was in your shoes, watchful waiting sounds like a good idea. I would not treat PC if I wasn't 100% sure. I have advanced PC and I am told by my surgeon, oncologist, and radiologist that no move I make should be in haste. My direction should be decisive once I have confirmed diagnosis results. 3+3 is very treatable and in 18 months you still are borderline with the PSA and the indications are that it is small and real early. I'd take a deep breath and relax, you have time and I would not rush to radiation until I knew for sure. Stay the course of an additional biopsy, then make a decision. If it is still contraversial, then simply take care of yourself, and keep a very keen eye on it. If it becomes more clear later then you know you need action and re-evaluate weather that action should be radiation LRP, or quite possibly stil watch and wait. I know you must be feeling enormous anxiety. But your imformation sounds like you are very early or perhaps pre-cancerous. Those cancer centers in Cleveland and Baltimore are pretty darn good. I am certain Loma Linda can wait but they can't reverse what they do in April.

Our prayers are with you that you do not have this stupid disease. But in my opinion, you don't have it unless it's agreed upon by ALL who have reviewed it. If you do have it, then you have time to get a clearer picture.

Good Luck, and take it slowly.
Tony

lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 664
   Posted 3/28/2007 9:33 PM (GMT -7)   
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.
 
Biopsy 10/16/06
T2A,  PSA 4.7
Gleason 4+4=8 right side
adrenocarcinoma of prostate
DaVinci Surgery 01/16/07
Post op report,confirms Gleason4+4=8
no extra extension/invasion identified
age 65
golf game bad, but active
 
 


hawkfan75
Regular Member


Date Joined Jan 2007
Total Posts : 165
   Posted 3/28/2007 10:10 PM (GMT -7)   
Having the second biopsy is a good idea.  As you can see by my signature, I was one of the ones who thought he was being overly aggresivie in tackling this beast, but would have gotten a biopsy much earlier if I knew just what the PSA numbers meant.  However, many have had higher PSA's and pre-treatment biopsy results and have a small amount of cancer confined to the prostate.  It's frustrating, but since it's relatively slow growing, it gives you time for further tests and decision making.  You didn't list your age, which will add to your decision making equation. 
Good luck!!!!
PSA 4.7 (up from 3.2 one year ago)
Biopsy November 8, 2006
1 of 10 cores positive 5% LEFT Side
2 others questionable (small gland proliferation)
Gleason 3+3
Robotic surgery January 19, 2007
Post Surgery Pathology
     Stage T3a, Gleason 3+4, positive margins and
     capsular penetration RIGHT Side
Post Surgery PSA:  March 5:  0.01


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 3/28/2007 10:11 PM (GMT -7)   

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


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 3/29/2007 5:44 AM (GMT -7)   
Teb,

I had a somewhat similar situation although the other way. The local urologist that did my biopsy sent it off to a lab called Danon and they came back with 1 or 12 showing cancer. I had a second opinion done at Vanderbilt Univeristy and they obtain the slides and read the one that was positive as being atypical and not adenocarcinoma. My sugreon at Vanderbilt then sent to slides to Dr. Epstein. He agreed with the Danon results. My surgeon told me that in about 5% of the cases they have each year their is a question about the pathology when read by two different pathologists. He said that for years now he has been sending these to Dr. Epstein and has always gone by his reading. The results are that the post op pathology has always confirmed Dr. Epstein's findings. He has never been wrong. I would trust Dr. Epstein and wait until a bippsy shows you have PC before seeking treatment.

Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
Catheter out on 11/13/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07


teb829
New Member


Date Joined Feb 2007
Total Posts : 10
   Posted 3/29/2007 6:34 AM (GMT -7)   
Dutch, I had a free PSA done... it came back 0.2

BooMan
Regular Member


Date Joined Oct 2006
Total Posts : 27
   Posted 3/29/2007 10:19 AM (GMT -7)   
teb829,
Our circumstances are similar.  I wouldn't dream of giving you medical advice.  Get that from a professional.  The great value I see in this board is that from the individual "journeys" you will find out what other folks have done with the professional advice.  I have twice had conflicting expert opinions regarding biopsy interpretation.  On the "you've got cancer" side are reports of staining tissue samples and interpreting adenocarcinoma in a couple of glands in two out of 24 cores.  On the "maybe you don't" side (both times from Johns Hopkins path lab) are notations that other cellular structures can imitate cancer, high grade PIN cannot be ruled out, and another biopsy should be done.  I was just as confused and am still frustrated.  My choice was to make an appointment with a urologic surgeon at Johns Hopkins.  He basically said that one of these labs is wrong.  Naturally he places most confidence in JHU.  If the "you've got it" folks are wrong I could be going through needless treatment.  If the JHU path dept is wrong what happens?  The surgeon told me that with the lower Gleason (3+3) that the positive report showed, the almost microscopic involvement of only a couple of glands, a low PSA (.8), and a DRE that does not have the usual hard nodule associated with a cancerous tumor that I could wait.  I believe him when he says that he would recognize a case that would require immediate treatment.  He suggested a yearly biopsy and PSA tests every 6 months along with DRE to look for any change.  I like the idea of getting a more definitive result, or at least agreement among the expert pathologists before starting treatment.  I have no intention of ignoring the fact that one of them said it's cancer.  I wasn't comfortable with waiting a year so I went to my urologist at home and am getting PSA tests along with DRE every 3 months and will have a biopsy (May 8) at about 6-7 months after my last one.  When those results come back, I will decide how to continue.  That's what I've done.  I could be a fool or I may be taking an intelligent course for me.  Time will tell.  The only thing I would caution about in your post is the time frame between an April 2 biopsy and April 10 treatment.  My experience has been that it would take longer than that to get the first and second opinions.  Perhaps you can get the results faster.  Good luck and let us know how you're doing.
Boo         

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 3/29/2007 10:58 AM (GMT -7)   

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


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/29/2007 11:06 AM (GMT -7)   
Wow Teb, that really sucks! I think that most of the guys here will tell you that the waiting is the worst part of the whole ordeal, but to be unsure and have conflicting opinions really stinks! I know that this involves a lot of anxiety but just look at the bright side, You May Not Have Cancer! Wouldn't that be GREAT? I don't like giving advice on anyones treatment but I have to agree with my other brothers here who are voting for another biopsy 1st and if the same thing happens again, which would really suck, but not as much as PC my good friend, then wait and get another. You really don't want to join our club unless you definitly have to. Just my opinion. My prayers are with you.
Your friend,
Pete
54 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. Testosterone Theropy since 12/06, Erect, Dry & Lovin Life!!! I am's what I am and that's all that I am!!! 


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 3/31/2007 8:06 PM (GMT -7)   
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

"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


68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.

Post Edited (pcdave) : 3/31/2007 9:34:11 PM (GMT-6)


teb829
New Member


Date Joined Feb 2007
Total Posts : 10
   Posted 3/31/2007 8:54 PM (GMT -7)   
Dave-Thank you for taking the time to reply to me, I really appreciate it.My free PSA came back as 0.02.I've been told it should be in % but my doctor says that's the way it comes back and is normal. ( He also wanted me to go for surgery within 2 weeks of being "diagnosed" ) I'm going for a biopsy on Monday (April 2) at the Cleveland Clinic-I'm going to ask for at least 20 samples to be taken as you've suggested and I'm going to ask them to do a free PSA there.Where did you have your proton treatment?? I hope I don't need to be treated but if I do I'm confident about the proton therapy-Thanks again for everything you've suggested . It will be very helpful to me-Tom

pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 4/1/2007 8:28 PM (GMT -7)   
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.
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.

Post Edited (pcdave) : 4/1/2007 9:51:42 PM (GMT-6)

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