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Calling all with Extracapsular extensions (ECE) and Positive margins

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Posted 4/28/2008 8:12 AM (GMT -6)
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
Posted 4/28/2008 9:30 AM (GMT -6)

My situation appears to be similar to yours.  I thought I would be out of the woods with surgery but did not quite get there.  I do believe (my opinion granted) that Da Vinci/Nerve Sparing surgery produces more results, similar to ours but I also believe it presents the best option for perserving sexual function and continence.  My doctors (surgeion and urologist) had a discussion on whether I should go for radiation immediately after surgery and agreed we should wait since they have both seen many situations like this never progress after surgery but some do.  I just finished salvage radiation and initiated it before I reached the .2 recurrence threshold, I just did not want to wait.  With the advances in IMRT I would encourage you to do adjuvant radiation if you have a propensity to worry like me.  There is some piece of mind that comes with knowing you have taken extra steps to address possible issues in the future.  With all this said it really comes down to personal choice as it always does, good luck with your decision.

PS:  Alot will depend on that first PSA test post sugery, if you go below .01 then there is alot of evidence to suggest you might be out of the woods but certainly no guarantees.

Posted 4/28/2008 9:48 AM (GMT -6)
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
Posted 4/28/2008 4:30 PM (GMT -6)
thanks for writing Fair Rider
Tony is much better to listen to than I am on this. I had the surgery and was told that since it had spread to the lymph nodes that it was inoperable, bear in mind I was having surgery when this was determined. It was agreed before hand that if the cancer was detected in two or more nodes that the surgery would be aborted, I suppose now in hindsight I should have decided to go ahead and remove the prostate, but hey I can't look back. I am confident I have got this thing at bay and plan to do so for years to come. I pray that you will have a good outcome and God will bless you in ways that you cannot see yet. It is amazing the power of the Lord and what he puts on us, and even more amazing is how we handle what is given to us and become better people. Stay positive and please keep us posted.

Peace and love
Dale
Posted 4/28/2008 5:54 PM (GMT -6)

I take it as a good sign that the pathologists don't agree. There is clearly some doubt that the cancer has gotten into the margins -- which is in your favor. Even with positive margins, my readings indicate that the prospects for a "cure" are still good. So you have good reason to be optimistic.

Now it all hinges on that first PSA result -- good luck with that.

Posted 4/28/2008 7:32 PM (GMT -6)
First PSA result at 6 weeks post-op: <0.01!

Now, I guess we have achieved Nadir? This would be our baseline and if diet has a real effect, my bold husband, and his diet changes, WILL kill off anything wanting to remain from that EPE or margin. He has lost 20# from diet changes - was only 195 to begin with, now 175, but he feels good and getting stronger. The incontinence is manageable - seems to only happen when he falls asleep, or coughs, laughs out some. So, today its pretty good news - nice to say that for a change.

FairRider
Posted 4/28/2008 8:23 PM (GMT -6)

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

Posted 4/28/2008 11:50 PM (GMT -6)

montee said...

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

This is a good question.  Now, after reading all the posts in this thread, I think I'd like to get a second opinion as well. 

FairRider, how did you go about getting the second opinion on the pathology report and how long after surgery were you able to get it?

My margins were clear, but the original post op path report said, "tumor extends out to but not through postatic capsule".  Kind of close confused

Posted 4/29/2008 5:49 AM (GMT -6)
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!
Posted 4/29/2008 5:56 PM (GMT -6)

FairRider said...

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.

That's what I would like like too! I'd also like to see a video of my surgery showing exactly what happened and what came out.

Maybe that's just two weirdos in here :-) 

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