Biopsy report call-- what info to ask

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compiler
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Date Joined Nov 2009
Total Posts : 7205
   Posted 12/2/2009 9:56 AM (GMT -6)   
I expect to receive a call from my doctor with the biopsy report. There is a good chance I'll be at work and my wife will take the call. I really don't want to hear "you have PC" without any other information. I started a brief list of questions my wife (or myself if I am home to receive the call) should ask.


Can you please look this over and perhaps add to this list?




MAKE SURE DOCTOR WILL BE MAILING TO ME THE COMPLETE DETAILED BIOPSY REPORT

If NEGATIVE, WOO HOO:

What is the size of my gland: ______ gms?

Gameplan: when do I do my next PSA? Anything else?

If I have PC:

1) How many cores were positive and what percentage in each core?

2) Was there positive cores on both sides?

3) Gleason Score? # + #

4) What is the stage (code)?

5) Any signs of extra-capsular penetration?

6) What is the size of my prostate? _______ gms.

7) Margins? Clear?

8) GAME PLAN – WHAT DO I DO NEXT?



Mel

Post Edited By Moderator (James C.) : 12/2/2009 9:01:45 AM (GMT-7)


James C.
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Date Joined Aug 2007
Total Posts : 4462
   Posted 12/2/2009 10:09 AM (GMT -6)   
Unless I am mistaken, there will be no report of extra-capsular penetration nor margins, these are items that is obtained after surgery from the after surgical pathology report. about all the biopsy can give you is the number of cores taken, the number containing cancer, the scaling of the Gleason score, with some description of the various types of defective cells observed, a rough estimate of the size of the gland, the ultrasound measurement is really just ballpark. Basically, you will be told that you have or don't have PCa, the GS, the number of cores involved and which lobe the cancer is in, and maybe a directional reference to where in the lobe (ie. upper, midddle, lower). The biopsy is really just a yes/no techinque, with not much in the way of really detailed information resulting from it during the initial exam of the biopsy slides. It is recommended that any biopsy be read by 1 or more outside specialists, and maybe even more specialized exam if the cancerous cells appear really aggressive type, or a really high Gleason scale.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 12/2/2009 10:12 AM (GMT -6)   

What about staging?

 

Mel


PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro!
 
History of BPH/prostatitis.
 
Awaiting results of my PCA-3 test which will determine whether a biopsy is in my immediate future. Just in: BAD NEWS: PCA-3 = 75.9! Cut-off is 35. Biopsy scheduled for 11/30


geezer99
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Date Joined Apr 2009
Total Posts : 990
   Posted 12/2/2009 10:13 AM (GMT -6)   
Looks like a good list. A lot of us have learned the benefit of having a pencil and paper handy when talking to a doctor.

Almost all doctors will want to meet with you and discuss the results. (I don't know about your situation with long travel times) so
the call with the results is simply a courtesy to put an end to your wondering rather than to give you a full set of future options. By the way, my uro normally doesn't call unless asked. He says that people hear "cancer" on the phone and then don't hear another thing he says. He thinks that leaving people in that state is more cruel than having them wait a few days to come into the office where he can look them in the eye
and be sure that he is getting through. He actually called me at 7 in the evening because he didn't want to leave a message.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


riverbend
Regular Member


Date Joined Mar 2009
Total Posts : 39
   Posted 12/2/2009 10:45 AM (GMT -6)   
If if if if if if if if if if if....I repeat, IF the Biopsy shows that you have prostate cancer you will likely be staged either T1c or T2c. The only way you'll get a T2c is if there was a "bump" felt during the DRE. Staging is more definitive after surgery. IF you even have to worry about that. IF.
Dx T1c in April, 2009 at 45 years old after recent PSA tests ranged from 2.93-3.25
2 of 14 cores positive at 5% and Gleason 3+3... 2 cores taken from a "protuberance" were "ASAP"
Proton radiation at LLMC May-June 2009


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 12/2/2009 10:46 AM (GMT -6)   
And don't depend on the doctor calling you. Most likely will be a nurse. In fact, many doctors will only talk to you in person.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/2/2009 11:10 AM (GMT -6)   
Even with 3 biopsies, I was never given a stage. And remember, Mel, that even a good biopsy is but an estimate of what is going on inside you. It is not the total picture. With many men, their biopsy staging and gleason remain the same after surgery, if they choose surgery. And some men, the staging and/or gleason get upgraded in the post surgical biopsy report, because they have the entire gland to look at. In rare cases, some mens gleason scoring gets downgraded.

The only way you would ever know about margins or penetration or escape, would be in a post surgical biopsy report, there's no way to know any of that ahead of time.

The rest of the questions on your list are typical and would normally be answered on the biopsy report.

I know this waiting is driving you crazy, we have all been there before

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 12/2/2009 11:19 AM (GMT -6)   

I would suggest: 

 

(1) In addition to asking for the Gleason score, also ask whether any tertiary pattern was observed.  As you probbably know, the Gleason score consists of the two most prominent Gleason patterns that were observed.  (Hence the X+Y format).   But  there is sometimes a third (though less prominent) pattern observed, and that can also be relevant.  For example, a 3+3 with no tertiary pattern would be better than, say, a 3+3 with a tertiary Gleason 5. So it is worth asking.

(2) I would also request --- regardless of the Gleason score -- that your doctor arrange for a second opinion on the slides to be done by a pathologist with special expertise in prostate cancer pathology, such as Bostwick Labs or Dr. Epstein at Johns Hopkins.   If your doctor recommends someone else, make sure that lab/person really is an expert.  It is not uncommon for Gleason scores to be changed upon re-reading by such an expert, and because treatment decisions are often made, at least in part, based on Gleason scores, it is important to try to get it right.

 

Good luck.  I hope all off this turns out to be totally irrelevant to you.

 

 


Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4157
   Posted 12/2/2009 12:48 PM (GMT -6)   
Mel:
 
...all good questions that others have suggested.  But...the most important thing is that you get an appointment ASAP to sit with the physician personally (with your wife) to discuss your report in depth.  A phone call just doesn't cut it.
 
Tudpock
Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/2/2009 8:16 PM (GMT -6)   
Mel- Simply tell him how soon can I get a copy faxed, emailed, whatever,you want the full report in your blanking hands asap....I told you this prior....it is that blanking important...talk is cheap. Nice to go over it too, but make absolutely sure you get the copy and the docs name whom did the pathology is on it.

Best to you.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/2/2009 8:24 PM (GMT -6)   
Absolutely, zufas, I remember had some trouble getting a full copy of my final biopsy with the pc dx, I showed up unannounced at the pathology lab and demanded it on the spot, and got it. They were not use to patient's just showing up.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/4/2009 10:42 AM (GMT -6)   
David (Purg) very bold and empowered of you to demand pathology copy, I did the same thing unannounced at uro's office, talk about catching them off guard, they probably wondered if you have a lawyer or suit pending  (LOL).  They were surprised and I could since I might have been the first one, to demand it on the spot. Naturally with their waiting room people sitting there, it would not look good to have a scene which I was prepared to give if I did not get a righteous answer from them. Probably uro-doc was thinking, oh---he is shopping elsewhere for treatments as he has the pathology report which for second opinions is a must have item.
 
Keep us posted on your journey Mel

Post Edited (zufus) : 12/5/2009 7:02:45 AM (GMT-7)

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