Calling all with Extracapsular extensions (ECE) and Positive margins

Hello everyone -

I haven't been here in awhile - trying to recoup from surgery and live a little without constant research and online presence......

But now we approach the first PSA post surgery - in fact he's getting blood drawn as we speak. Our 2nd opinion pathology said there was indeed an ECE and also a postive margin there, which 1st pathologist did not find or claim. In fact, 2 pathologists at the 2nd opinon lab did not agree - the first said, "clear margins", the 2nd said, "tumor went to the ink, but it was somewhat crushed" (whatever that means).

We have come to believe the Pathlogy report is like a crystal ball and therefore very important to get all information from it as possible. Even with 3 readings, we still do not completely know where this tumor was located, how large or small the extension is, and if we can still think we might have a chance at 'a cure'. We were encouraged toward surgery because it was thought a small tumor, small soft prostate, given a T1c under anesthesia at surgery. Now, we have not only 'upstaged', but 'stage jumped' and so feel a bit 'under diagnosed' from the onset. I know this happens more than we'd like, but when we requested an Endorectal MRI, Bone Scan, and or Ultrasound, we were told they would not be necessary - we are in the group that has a good chance for a cure with surgery.

SO, We would Love to hear from others in this kind of boat - what outcomes, treatments, or advice. THank you in advance!

FariRider

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Age 54; (Father, paternal uncle and 1 brother so far with Pca)
1999 PSA 2.8; 2004 PSA 2.88; 1/2008 PSA 5.6 & repeat 4.37
DRE - "Unremarkable, L side slightly larger"
Free PSA 0.46 and ratio 0.11
Biopsy 1/25/2008 - 10 Cores - 4 with adenocarcinoma
3 cores Gleason 3+3=6 and 1 core 3+4=7
No Stage given on report, maybe T1c or T2c ?

Robotic Surgery March 17, 2008
Both Nerves Spared - Pre-surgery DRE - TC1
Post Op Pathology - T3a Extra-prostatic Extension,
CLEAR margins, 4 Lymph Nodes Clear, Seminal Vesicles clear.
Gleason now 4+3+7, Tumor 20-30% of gland
Dry immediately! - no pads by day 9 Post-op
No response with Viagra, minimal with Bimix

I am down that road quite a ways now. 4 positive margins, bilateral seminal involvement, extra prostatic extension to the pelvic bone (bone mets not confirmed). I too am a 4+3=7. I am doing well. I am also glad we did not do those extra tests because they would likely have told me it was inoperable and I'm glad the prostate is gone. In fact, new studies show that removal for my stage is better than not removing it. After surgery my PSA went to undetectable. A big relief but because of the "grossly abnormal" pathology (that's what they called verbatum) I was sent to oncology. I then started hormone therapy and then radiation. I know what lies ahead if my PSA rises, so I just stay positive. My advice is that you guys do the same. It is not impossible to never have to deal with this again for me and so it isn't for you too. We can get well together as biker Jim says. My prayer is for an undetectable PSA. But don't be surprised if additional treatment is recommended. I had to weigh the options and went with the dam the torpedoes approach. We fired everything at it. I feel great and have no regrets.

God Bless you guys....and STAY POSITIVE!

Tony

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Age 45 (44 when Dx)

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Age 63. Other than cancer, in good health

How long do they keep your prostate at the hospital of surgery and path report, if you want a 2nd opinion of post op pathology report.

Ron

The Pathology IS your Crystal ball. There are several sites that list the names of Pathologists very experienced in Prostate CA. Everything we read said to get 2 opinions on biopsy and Path. Labs have different times for keeping, but our 2nd will keep it for 30 days, then it returns to 'home lab', where they said they keep the slides 10 or so years, I think. Its a good thing to ask.

Here is a link to a PCRI list of Pathologists:

http://www.prostate-cancer.org/resource/special.html#pathology

That site also has great explanations of biopsies and pathology.

What I would really like, would be 20 minutes with the Pathologist and the specimen - I'd love to see the tumor to get a grasp on it. I wonder if such a thing would ever be possible in our system of healthcare - I think I would be labeled a weirdo for asking, but that's how I am.

Good luck and prayers to everyone!

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Age 54;
Familial Pca - Father, paternal uncle, 1 brother
1999 PSA 2.8; 2004 PSA 2.88; 1/2008 PSA 5.6 & 4.37
DRE - "Unremarkable, soft"
Free PSA 0.46 and ratio 0.11
Biopsy 1/25/2008 - 10 Cores - 4 with adenocarcinoma
3 cores Gleason 3+3=6 and 1 core 3+4=7
No Stage given on report, maybe T1c or T2c ?

Robotic Surgery March 17, 2008
Both Nerves Spared - Pre-surgery DRE - TC1
Post Op Pathology - T3a Extra-prostatic Extension,
CLEAR margins, 4 Lymph Nodes Clear, Seminal Vesicles clear.
Gleason now 4+3+7, Tumor 20-30% of gland
*Update - 2nd opinion Pathology says "established EPE & positive margin"
Continence ok, except when sleeping - No response with Viagra, minimal with Bimix
4/28/08 - 1st Post-Op PSA = <0.01