Bad Margin and what to do

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Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 6/23/2008 8:27 PM (GMT -6)   
Hi All,
 
I am 12 weeks post op and am soon going to decide what to do if anything about a bad margin.  I am meeting with Urologist and then radiation oncologist July 2nd.  What do I need to know and/or ask them.  All I know is that I had a bad margin.  Encapsulated, seminal vessels clear and fatty tissue around also clear, gleason 7,   6 week PSA undetectable. Oncologist and Urologist say I have 86% chance no reoccurence.  Oncologist recomends radiation to increase my odds.  Urologist is on the fence and I got the feeling he is waiting for something else like another PSA or something, I dont know.
 
I am down to 1-2 pads a day and erections are close to before surgery but not used much with the leaking thing.
 
I would like to hear from some brothers that have had to make that decision with the margin.
 
Thanks,
 
Frank
Diagnosed 01-08-08 @ 53 years old 
DRE normal - High PSA for 5 or more years
2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
Current PSA 6 - Bone and Ct scans negative
clinicalg Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008
University of Chicago,5 hour surgery , 3 hour recovery
Unexpected Cardiac issues appear and disappear?
Hospital stay 30 hours - Catheter out in 7 days  normaly expected leakage - Erectile funtion back on line 9 days 
Post Pathology T2C, Gleason 7, 10 % of both portions of prostate, Seminal vessels clear, fat tissue clear,Tumor on top of prostate distal from apex. 1 positve margin at urethra and bladder.
Six week PSA < 0.05 Ya Ba Da Ba Dooooooooooo.  Put a steak on the grill Wilma!!!!
Oncologist to discuss case with Urologist and Radiation Oncologist to consider radiation.
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 6/23/2008 9:28 PM (GMT -6)   
Frank,
I posed this same question www.healingwell.com/community/default.aspx?f=35&m=1158874 a short while ago after a consultation with a medical oncologist and I am still debating what to do. Be aggressive or wait and see. Personally I am inclined to be aggressive and take pre-emptive action but there are costs (side effects). According to him there is much dispute about adjuvent therapy without an increase in PSA following surgery being of benefit especially with negative surgical margins. It will be interesting to see what the radiation oncologist's opinion is when I see him in a few weeks. I will be interested to see what yours has to say. This is a valuable link that PcDave provided earlier that may address your question, although it is upon PSA detetection.
www.cancercompass.com/cancer-news/1,14377,00.htm?c=1004:5:1:2
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable

Post Edited (BillyMac) : 6/23/2008 10:05:28 PM (GMT-6)


hawkfan75
Regular Member


Date Joined Jan 2007
Total Posts : 165
   Posted 6/23/2008 10:02 PM (GMT -6)   

Frank

We have very similar circumstances.  Whether to get the adjuvant therapy or not is a tough decision you'll have to think about.  Because of my positive margins, my surgeon and oncologist were preparing me mentaly for additional therapy at my first post surgical meeting, when my PSA was .01.  When to got to .08, I decided to go for it.  They brought up a couple of recent studies that indicate RT and HT within the first year for patients like me will decrease the incidence of reoccurance.  However, as my surgeon put it, the radiation will probably destroy the nerves he spared.  My desire for a long, long, life outweighed the other possible side effects.  I had no problem with the radiation, and have minimal effects with hormones.  I think they got the nerves, but what will be will be.  Take time, do a lot of reading and you'll come up with the right decision for you.

good luck 


Age 57 at diagnosis,  PSA 4.7 (up from 3.2 one year ago)
Biopsy November 8, 2006 1 of 10 cores positive 5% LEFT Side 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    5 month PSA  0.08
Adjuvant therapy began June 26 with Zoladex injection
Radiation began August 23, ended October 8
First post radiation PSA, December 18, 2007:  0;  March 2008 - still 0
 
 


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 6/24/2008 7:21 AM (GMT -6)   

Thanks for those articles I read them.   Very much to the point...

My team??? was supposed to meet and the radiation oncologist was supposed to call but he did not, someone forgot.  No big deal but I dont get a warm and fuzzy feeling when my team makes another error. 

My Urologist states sending a patient to an oncologist or RO is something new and procedural for them now.  All seemed especially happy to see the 6 week PSA at undetectable both said that is huge.  The Urologist stated that out of 100 patients he had with bad margins, one needed radiation and is fine and the other did not and it fine. The Urologist assistant stated to me the other day even if you need radiation in talking and I thought "even if".  what the heck?  What is your recomendation then...  I want to know the exact number of my PSA at 6 weeks and the one upcoming at 3 months.  I dont care what they think it means it will mean a difference to me,  maybe little maybe a lot, give me the numbers......

My Urologist who I had grown to really trust and respect made an off the cuff statement " if you have radiation there goes my nerve work" oh my stomach dropped and it scared me to the point that I do not look at him or my situation the same.  I suddenly realized that this "Team" thing is not what its cracked up to be.  I am on my own here except for family and other support resources.

I will beat this thing but it will take a lot more due dillagence on my part to succeed.

Frank

 

 

 

 


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 6/24/2008 7:44 AM (GMT -6)   

Frank,

This is one of the tougher calls to make in PCa.   I agonized over what to do with a positive margin pathology.  Do you do adjuvant without a rise in PSA or wait for a rise?  The studies appear to be inconclusive. I played cat and mouse on PSA until it shot up at the five month mark --- so the decision was made for me.

True, the radiation will most likely undo the nerve sparing part of your procedure...BUT....

I had a NON-NERVE sparing RP 2 years ago, follow up radiation and hormone therapy.....  I recently began having "usable" erections with the help of cialis.  Bear in mind this is EXTREMELY rare --- but I figured permanat ED I could live with if that's what it took to give me my best shot at a cure.

Tough call --- but you probably still have some time to make a decision.   You're smart get the consulatations from the radiation guy now.  GOOD LUCK!

 

 

 


Sterd82
Age 47 - pre-surgery PSA 39
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
Next PSA November of 2008


Jmon
Regular Member


Date Joined Feb 2006
Total Posts : 82
   Posted 6/24/2008 12:15 PM (GMT -6)   

Frank,

I rarely post here as I have, thus far, been fortunate with my outcome (just knocked on wood ;-)). It seems that, understandably, this forum is populated largely by people who are still in the throes of the battle. Those, likely the majority, who have had favorable outcomes have tried to put it behind them and move on. So reading the forum may tend to give a skewed view of the percentage of patients who win this battle. When I saw your post I thought my experience might be of value.

My diagnosis came as a result of a suspicious DRE and psa of 4.0. Biopsy revealed 3+4=7, 5 out of 18 cores positive. I did extensive research and eventually decided on DaVinci surgery with Dr. Kawachi at City of Hope. Surgery was uneventful, both nerves spared, and my path report came back as organ contained, still 3+4, but with 2 positive margins. I asked Kawachi what he thought I should do. His answer was something like,"I can set you up to meet with a radiation oncologist if you like, but if it were me I'd just enjoy life and keep an eye on my PSA". As I was relatively young (57) and enjoying all aspects of my life I took his advice. I knew from my research that radiation was sure to have an impact on ED and continence and figured if I could get some more good quality living in that that would be my preference. I was continent and potent with a couple weeks. Actually went back to work 1 week to the day from the surgery which, in retrospect, was pushing it a bit.

Bottom line is, I am now 34 months out and have been getting the basic PSA <.1 results up until last month when I had the next generation PSA test done. My PSA came back at <0.03. which my doc tells me is as low as that test reads. Obviously I am elated and glad that I made the decision I did. Even if I get a recurrance at some later date, I have had at least 3 years of good living to enjoy. Of course, there is never any guarantee that you outcome would be the same, but thought some positive words might help to balance the info here. Good luck with whatever your choice.


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 6/24/2008 4:48 PM (GMT -6)   
Hogwash!

I had 5 weeks of IMRT, 3 sessions of HDR brachy and HT for two years, then a break for 8 months or so and back on Lupron. I can still get it up - no drugs, no injections, nuttin'.

Ask your urologist, if HIS life depended on it, what would he do?

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - PSA undetectable, T is 20 and only one nodule has grown (from 8mm to 12mm). Feeling much more confident than after 2/2008 reports


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 6/30/2008 11:54 AM (GMT -6)   

Thanks all for your experiences.  I have been on this site for a while now and the information that you get is amazing. Jmon thanks for coming out of the shadows.  I too have thought this site is weighted towards those who are still in treatment and such, its only natural that those who are in a balanced period move on with things.  We all hope they will ( we will) .

Your information as well as Gordy's and all my other Prostate buddies ( and gals )  is very helpful to me.  I see the Urologist July 2nd for my 3 month and the radiation oncologist July 11th.  I will report back to y'all after the appointments.  I am hoping to have my 3 month PSA before the radiation guy and I dont know why we dont do it before the 3 month.  I dont get it.  If it is now detectable, doubles or triples and is even less detectable I would think would be a big deal.  I dont get the timing with the Doc's not at all.

 


Diagnosed 01-08-08 @ 53 years old 
DRE normal - High PSA for 5 or more years
2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
Current PSA 6 - Bone and Ct scans negative
clinicalg Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008
University of Chicago,5 hour surgery , 3 hour recovery
Unexpected Cardiac issues appear and disappear?
Hospital stay 30 hours - Catheter out in 7 days  normaly expected leakage - Erectile funtion back on line 9 days 
Post Pathology T2C, Gleason 7, 10 % of both portions of prostate, Seminal vessels clear, fat tissue clear,Tumor on top of prostate distal from apex. 1 positve margin at urethra and bladder.
Six week PSA < 0.05 Ya Ba Da Ba Dooooooooooo.  Put a steak on the grill Wilma!!!!
Oncologist to discuss case with Urologist and Radiation Oncologist to consider radiation.
 


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 6/30/2008 4:01 PM (GMT -6)   
Guys
 
I can't say much about anything that is related to surgery as I am not there.  I can only say that they strongly thought I had a lymph node that was involved.  I think this would be more serious than bad margins but have no real knowledge to state such.  I can only tell you that after only about 17 IMRT treatments my CT/MRI indicates it is no longer suspect and will not be radiated after my 25th IMRT treatment which was today.  Tomorrow I start the 17 Proton treatments to the prostate only.  I guess what I am saying is that from this I am confident that radiation works and if it were me in your shoes I would opt for immediate radiation treatment.
 
The best to everyone who is fighting this fight.
 
Richard yeah
Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
Jan & Feb & Mar all tests clear
MD Anderson = No surgery and No Proton only Hormone and IMRT
Contacted with Loma Linda and UFPTI in FL
Started Treatment at the U of Florida Proton Therapy Institute in April 2008
May 2, 2008 LUPRON & Casodex
IMRT to started  5/27/2008 Will get 42 treatments 25 IMRT and then 17 Proton
Turn Stumbling Blocks into Steping Stones and Keep Smiling
Our Journey is on WWW.GLEASON10.COM
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 6/30/2008 4:16 PM (GMT -6)   
Frank,
I don't know how the medical system works in the U.S. and if you are able to, but if you are saying that your 3 month PSA is done after your next consult with the Urologist I would see about moving the test forward a week or so....... you would at least have a result to discuss with him. Seems a little unusual if you receive a result between the Urologist consultation and the radiation guy's consultation.......they should be looking at your progress based on the same tests.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 6/30/2008 4:44 PM (GMT -6)   
smilingoldcoot Richard,
 
lymph node involvement would be considered more serious/advanced than margin involvement.
 
prostate cancer spreads to other parts of the body via the lymph nodes.
 
fyi
 
DanMan
Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 6/30/2008 8:51 PM (GMT -6)   
Frank

I had what they called cells real close to the margin and warned me while they thought evereything would be fine there was a chance it could still be there or come back. Well for the first 9 months of tests my PSA was .1 or less and looking good then month 10 it came in at .2 so we re-tested again in January and now it was .3 so radiation was the plan. They felt due to my pathology report that it must be some left over cells in the prostate bed area and that radiation would take care of it. I wish I could tell you it worked but I am just 26 days removed from 36 proton treatments and don't have my first follow up PSA for over a month yet. I guess you could say I followed the plan of hopefully it was gone and if not we could do radiation, was it the right plan time will tell. I am very optimistic that this will be sucessful and I share thiswith you to hopefully help you decide your next plan of action. As for side effects they were not bad and as they say all the plumbing works with out medication but it's also early on for that to know if there will be long term problems but for now all is well.
Good luck

Norskie
norskie
Age 49, PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Surgery Pathology report 4+3=7 a couple agressive Grade 5 cells found
Da Vinci surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
1st & 2nd Post PSA Blood Test .1 and less - Undetectable
3nd Post PSA Blood Test 01-17-07 .3
March 27th PSA .4 Begin Salvage Radiation April, 14 2008
Incontenence-Pad free since end of May 07 4 1/2 months post surgery 
ED back to 95% prior to surgery - no medication required.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/1/2008 10:04 AM (GMT -6)   
Hi Frank,
I was at 12 weeks when I decided to dam the torpedoes and fire away. And I had a different scenario with the docs. It seemed that after my initial urologist that my selected surgeon and subsequent visits to my medical oncologist, and radiation oncologist have been very up front and on the same page. As has my web research as well. I know exactly where I stand and the odds that are not in my favor don't mean much to me anymore. I'm too busy living. but for you, you are in a very contraversial position and that alone will lead to the varying discussion with your docs. If it were me in your shoes, I would not be discussing any hormone therapy as yet, but might bring it to something as simple as a coin flip on the radiation. You have time, and if repeat PSA's are negative then you have yet more time before the flip turns to necessity. Not sure why your surgeon says that the nerves would surely be destroyed. My RO said that it could be a side effect but that was not a sure thing and many don't have the issue. Anyway, stay well and stay positive. You have all of us on your side.

Tony
Age 46 (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 (May 9 '08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
And at:
 
STAY POSITIVE!
 
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