HealingWell
Search Close Search

Calling all with Extracapsular extensions (ECE) and Positive margins

Chronic Illness Forums
>
Prostate Cancer
>
Calling all with Extracapsular extensions (ECE) and Positive margins  
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/28/2008 7:12 AM (GMT -7)
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
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

Posted 4/28/2008 8:30 AM (GMT -7)

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.

DX 8/05 Gleason 5, Mayo clinic Second Opinion Gleason 6, PSA 2.8

Da Vinci surgery Dr. Dasari, Centennial Nashville 9/24/05

Pathology Report Gleason 6, 15 % on left side only very near to the edge of capsule, too close to call on margins, doc's said to watch it very closely, final decision T2A

PSA's have basically ranged from <.04 to .05 for two years.

no E.D. and no Incontinence, feel very blessed

PSA Nov 07 = .06

PSA Dec 10th 07 =.07

PSA Jan 4th 2008= .1

Started Guided IMRT on January 7th, 2008 to treat prostate bed and lymph nodes

PSA April 18th 2008 =.03

Posted 4/28/2008 8:48 AM (GMT -7)
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
Age 45 (44 when Dx)

Pre-op PSA was 19.8

Surgery on Feb 16, 2007 @ The City of Hope

Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)

HT began in May, '07 with Lupron and Casodex 50mg

IMRT radiation for 38 Treatments ending August 3, '07

Current PSA (1/08): <0.1

I will continue HT until May '09. 

Years in Remission (3/23/07): 1

Visit my Journey at:

http://www.caringbridge.org/visit/tonycrispino

STAY POSITIVE!

Prostate Cancer Forum Moderator

Posted 4/28/2008 3:30 PM (GMT -7)
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
My PSA at diagnosis was 16.3

age 46 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8

I had 44 IMRT's

Casodex

Currently on Lupron

I go to The Cancer Treatment Center of America

Married with two kids

Posted 4/28/2008 4:54 PM (GMT -7)

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.

Age 63. Other than cancer, in good health

Left hemi-colectomy April 2006 (colon cancer)

PSA 5.7, Gleason 4+5=9

RRP 7 March 2008, non nerve sparing

Histology showed clear margins and lymph nodes

Two nights in hospital

Catheter and staples out after 7 days

Continent, no pads needed from the get-go

No erections (of course!)

Experimenting with VED and Bimix

Posted 4/28/2008 6:32 PM (GMT -7)
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
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

Posted 4/28/2008 7:23 PM (GMT -7)

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

diagnosed sept 2006 @ 54 years old, live in Georgia

 biopsy report gleason 3+4=7, right lobe only

psa 4.7  (psa rose 1 point per year for 3 years, urologist said still under 4 and no concern.  If I can find out about PSA velocity, why didn't he know!)

Told not to have surgery at Dana Farber as cancer had already penetrated prostate, in seminal vesicles, would have positive margins. Would only treat with radiation and HT

RP Emory Atlanta December 2006

Path-negative margins, negative lymph nodes

negative seminal vesicles, multifocal perineural invasion, both lobes involved

40% gland involved

gleason 3+4=7

Fully continent 2 weeks post catheter removal

1st psa April 2007-<0.04

 6 Mos PSA <0.04

9 mos PSA still <0.04

12 mos PSA still <0.04

15 mos PSA <0.04 (3-21-2008) 

Posted 4/28/2008 10:50 PM (GMT -7)

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

Age: 50 (March 2008)

DX 1/08 @ 49 yo

7/05: PSA 2.6 DRE Normal

9/07: PSA 3.4 DRE Normal

1/08: Biopsy 1 of 12 cores with 10% involvement, T1c, Gleason 3+3=6

4/08/08:  Da Vinci Rad. prostectomy @ Banner Thunderbird, 5 hrs.

                Advised both nerve bundles spared

                Post Op Pathology Report: Tumor confined w/in prostate, pT2c, NX, DX 

    Gleason is 3+3=6, bilateral with 15% total involvement near apex

                Margins and Seminal Vesicles negative!!!

4/18/08:  Staples and Catheter removed. Drip, drip, drip, drip...

Posted 4/29/2008 4:49 AM (GMT -7)
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!
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

Posted 4/29/2008 4:56 PM (GMT -7)

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 :-) 

Age 63. Other than cancer, in good health

Left hemi-colectomy April 2006 (colon cancer)

PSA 5.7, Gleason 4+5=9

RRP 7 March 2008, non nerve sparing

Histology showed clear margins and lymph nodes

Two nights in hospital

Catheter and staples out after 7 days

Continent, no pads needed from the get-go

No erections (of course!)

Experimenting with VED and Bimix

✚ New Topic ✚ Reply

Forum Information

Currently it is Sunday, January 20, 2019 6:33 AM (GMT -7)
There are a total of 3,035,417 posts in 331,832 threads.
View Active Topics

Who's Online

This forum has 162987 registered members. Please welcome our newest member, Josephaloysius.
154 Guest(s), 3 Registered Member(s) are currently online.  Details
trekkar, aphysicalwreck, Skypilot56