Pathology back from John Hopkins

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 7/16/2009 3:27 PM (GMT -6)   
Hi All,
 
For anyone that does not know I was notified a couple of weeks ago that sometime in May my Gleason score was reviewed and changed from a 6 to an 8.
My surgeon then sent it to Jonathan Epstein at John Hopkins for a third opinion.  I received the report today and they confirmed it is a Gleason 8 (bad news) but agreed that cancer was organ contained, all seminal vesicles and surgical margins are negative.  Lymph nodes and associated tissue also negative for tumor.  My surgeon felt it was a good report.  I also had my PSA redone after 6 weeks and again it was 0.1 my doctor said that is still considered undetectable and they want it to be retested again in another 6 weeks.   He feels if there is a reacurrance of the cancer because it is still undetecable at 9 months it would be a non-agressive localized cancer and told me not to worry.  Yah right easy for him to say.
 
At this point all I can say to anyone is get second opinions on your pathology reports do not take the word of one pathologist.  David I know you also are going through this a tough time with misinformation from your doctor on your Path Report I cannot stress enough get another opition.  I am also sending my slides to a family friend who is a pathologist for him to review.
 
Jerry1
Age 69
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive 12% of sample,
Gleason Score 4+4 =8  Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Post Gleason report  3+3= 6 Lymph nodes on both sides negative
margins Negative  Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/19/08 dry no more pads
12/2/08 first PSA <0.1
 3/6/09 6 Month PSA 0.0
6/3/09 9 month  PSA <0.1
new gleason score of 4=4
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/16/2009 3:52 PM (GMT -6)   
The problem is, you have now moved into the aggressive cancer level. Even if it is localized, and yours certainly looks good, with no EPE or margin issues, many doctors and studies begin to recommend ajuvant therapy, just to make sure.

That is where I am at. PSA's look good, margins were clear, etc, but I am being advised to start radiation when I don't think I am sick.

Good luck, and I'm sure we'll be seeeing you around for a while.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 7/16/2009 3:55 PM (GMT -6)   
Jerry1,

Sounds like you got "good" bad news. Just saw that John Hopkins was again #1 hospital system in the nation.

So you are saying your PSA is .10? Or did you mean <.10? All the fuss with mine is because the 6 months one was .10, and the 7 1/2 month one was .11. So they are telling you that .10 is ok and not reaccurance? Don't want to read in between your words, perhaps you could clarify.

If you have to be a Gleason 8, I am glad that it is considered contained at this point for your sake.

Best to you.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, they want to start radiation, 70 gray, I am still considering all options and opinions
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/16/2009 4:16 PM (GMT -6)   
Hi Jerry,
That was a pretty wide disparity on the first read. But none the less the rest was good. To have Epstein look at it and say it didn't escape is very strong. On the subject of adjuvant therapies, it's your call. I believe that G8 is maybe, and one key part is if it's contained. You can sit on this one and do very well. In fact my US Too Facilitator was G8 in 1993. It was contained and he never was treated again. He looks great, but please don't tell him I said...He is the former President and CEO for US Too International...

Now it is time for many zeros...Stay well, and great job on your research.

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 7/16/2009 5:18 PM (GMT -6)   
 
Thank you all for your comments and support . I agree now I know the cancer is more aggressive and may require more treatment down the road but right now I going to wait and see since my surgeon feels this is still undetectable, if it rises again it will be a different story.  I just now have to live from PSA to PSA and hope for the best.  My wife can probably
qualify for a medical degree with all the research she has done and is also concerned with the rise but everything we have read said that 0.2 is when you start to worry and 0.5 is the cutoff. 
 
David the lab I use which is Lab Corp states that according to the American Urological Association, PSA should be undetectable after radical prostatectomy.  A PSA of less then 0.5 ng/ml is not likely to be associated with disease recurrence with five years of treatment.  I know some other labs measure differently but my Doctors do not go below 0.0  Not sure if this helps or we are comparing apples and oranges with your scores.  However, I do know if they continue to rise I will seek further treatment.  I also have an appointment with my urologist on Monday to go over the results of my CAT Scan, PSA & new Path report and I am sure he will have his own opinion. 
 
Jerry1 
Age 69
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive 12% of sample,
Gleason Score 4+4 =8  Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Post Gleason report  3+3= 6 Lymph nodes on both sides negative
margins Negative  Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/19/08 dry no more pads
12/2/08 first PSA <0.1
 3/6/09 6 Month PSA 0.0
6/3/09 9 month  PSA <0.1
new gleason score of 4=4
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 7/16/2009 5:32 PM (GMT -6)   
Jerry, good answer and clarification, sounds like you are dealing with higher level dr's than I have access to. This is one reason why I have decided to put off the rush to get me into salvage radiation for at least a month, and to have my PSA tested again on August 11th. I would personally be uncomfortable if mine was ever at .20 or higher, and especially if it got there fast.

Just can't shake the idea that the radiation center is fishing for business, because i know what 35 rounds of radiation would do for them. I want it when and if I need it, not to accomdate their bottom line. Too many possible consequences for me if I take it at a time when I don't really need it.

Thanks for you help too, I think we would all agree, it is a jungle out there like Bro. Zufas always likes to say, and even the experts don't agree with one another. So it makes it hard for us mere mortals to make the tough calls sometimes.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, they want to start radiation, 70 gray, I am still considering all options and opinions
 
 


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 7/17/2009 9:17 AM (GMT -6)   
 
David,
 
You are right I also would not rush into further treatment unless my PSA doubling time really took off.  Right now I want to try to get on with my life which is very hard with a rise in PSA but I have a very positive attitude and will take one day at a time and enjoy it. 
 
I think you are doing the right thing but I cannot stess enough about a second opition of the Pathology Report I thought since I went to a great doctor and hospital that the Path report was gospel but they all make mistakes and it does not hurt especially after what happen to you that someone else look at it.  Your urologist who made the mistake should send it to John Hopkins at his expense that is what my doctor did to confirm the Gleason 8.
 
Jerry1
Age 69
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive 12% of sample,
Gleason Score 4+4 =8  Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Post Gleason report  3+3= 6 Lymph nodes on both sides negative
margins Negative  Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/19/08 dry no more pads
12/2/08 first PSA <0.1
 3/6/09 6 Month PSA 0.0
6/3/09 9 month  PSA <0.1
new gleason score of 4=4
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 7/17/2009 9:21 AM (GMT -6)   
That's another great idea, my dr. office is only about 3 blocks from the house, time to leave a little piece of "love" mail for the good doctor. Although I am halfway afraid it might come back worse!

David
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, they want to start radiation, 70 gray, I am still considering all options and opinions
 
 


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 7/17/2009 3:24 PM (GMT -6)   
 
 
David,
 
I felt the same way but we all need to know what we are dealing with and go from there.
 
Jerry1
Age 69
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive 12% of sample,
Gleason Score 4+4 =8  Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Post Gleason report  3+3= 6 Lymph nodes on both sides negative
margins Negative  Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/19/08 dry no more pads
12/2/08 first PSA <0.1
 3/6/09 6 Month PSA 0.0
6/3/09 9 month  PSA <0.1
new gleason score of 4=4
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 7/17/2009 3:55 PM (GMT -6)   
Well, not knowing the truth would only complicate matters now and in the future, that's for sure
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, they want to start radiation, 70 gray, I am still considering all options and opinions
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, August 19, 2018 4:17 AM (GMT -6)
There are a total of 2,994,288 posts in 328,118 threads.
View Active Threads


Who's Online
This forum has 161267 registered members. Please welcome our newest member, Kweenkie.
107 Guest(s), 2 Registered Member(s) are currently online.  Details
Zimica, F8