Question about a friend

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Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 2/19/2009 11:05 AM (GMT -6)   
I have a friend who had Robotic surgery in April 2008. He doesn't seem to know much about his staging, all he could tell me is that his prostate was 8 times its normal size. His first PSA result was 57 and his secon one was 29. Doctors can't seem to know where the cancer is. He is just now going to an oncologist and will be getting a bunch if scans and other tests. He said that he feels good and has no pain anywhere in his body. Have you heard of a similar case?
Age: 67
5ft 10 inches 182 lbs
Retired in 2001 and living in Austin TX.
Dx 12/30/08
Robotic surgery performed on Feb 9th
Surgeon: Dr. Randy Fagin, Austin TX.
Negative CT scan and bone scan done on 1/16
PSA 3.5
Post op Pathology report:
Prostate weighed 57 grams
size:5.2 x 5.0 x 4.9 cm
10-20% involved
Bilateral
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
Lymph nodes: not dissected
seminal vesicles clean


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/19/2009 11:13 AM (GMT -6)   
Hi Ed,
The size sounds like total mass in the region. His PSA indicate that he has metastatic disease. We are missing some information to give our best assessments but just by the PSA numbers, your friend has a very serious case. if you can get what we call the Gleason score it will also help to determine the aggressiveness.

But there is some good news. He can be on hormonal therapy and will likely get his PSA down to nothing or near it, and adding radiation may also slow the disease. Your friend needs to contact the surgeon and get a copy of his pathology report. This will help him understand this diease better. And he really needs to. Sometimes guys like to look away from this monster but it really isn't a good idea. Learning about it and acting as a part of the treatment team is the best way to proceed. We have had many here with numbers far worse here and they have for the most part done well and for many years. This is why being involved is important.

I hope you friend does get this information and starts to read up on it.

Peace,

Tony


Age 46 (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 (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 2/19/2009 9:16:20 AM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 2/19/2009 1:09 PM (GMT -6)   
Hello Ed, nice to see you here, but in your story about your friend, there is definitely some important missing information, as Tony mentioned above. Kind of hard to ascertain what is going on with your friend at this point. Perhaps you could clarify some more info on him, and we can put our heads here to help and to support both you and him.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 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 capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 2/19/2009 3:07 PM (GMT -6)   
I'm not following what you're saying, Ed C. The friend had robotic surgery and the prostate was removed, and now the friend has a large mass of prostate cancer elsewhere and the doctors can't find its location? The PSA test results you're quoting, they're from before the robotic surgery, after . . . which? A good Urologist is where these questions should be directed by the friend. Someone needs to manage his care - probably his family doctor.

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (getting better, though)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0

 


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 2/19/2009 4:37 PM (GMT -6)   
Ed,
I noticed you saiid your friend's prostate was 8 times normal. Wow. I thought mine was large (140 mls). Assuming 20 mls size as normal I guess that would mean 160 for your friend. And it is interesting that the surgeon was able to use robotic surgery to get it out. In my case my surgeon opted for open surgery due to the large size (and to try to get it out thru such small lapro incisions would be a chore or impossible), Maybe they used a larger (open style) incision to get it out -- or something. My doc said that the large prostate size does make it 'challenging' to operate on, but had no qualms about it and had done one similar ones to mine with good results. (And mine had good results too I think).

jim

(Hey James C -- yeah the 140 mil was a sonogram estimate (from Biopsy) and of course the 110 gm weight is the final post surgerical weight -- i suppose the 110 is more accurate (as gms or mls since i would imagine the prostate to be ab out the same density as water?)
Age 58, 192lbs, 6'4", 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
Biopsy Nov2008 1 of 12 cores 5%, Gleason 3+3 - Sona showed 140+ ml (110 grams) prostate size.
Prostate way too big for any Rad or Seed treatment or even trying to shrink.
open RP surgery 02/03/9, Nerve sparing both sides, 1 day in hospital,
Post-surgery Pathlogy Report - All margins clear - No Invasive spread - no change in Gleason score.
Cath out on 2/18/9, passed a STONE within hours. To be analyzed by doc.

Post Edited (JimbStars) : 2/19/2009 9:11:24 PM (GMT-7)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/19/2009 5:00 PM (GMT -6)   
Jim, I first read your post to say you have a 140gm gland removed, which would have moved me to the second largest here, but on closer exam, we are tied for first... turn My Urologist wouldn't even talk about robotic on me, due to that size..
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- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 2/19/2009 5:36 PM (GMT -6)   
Yes, makes me wonder if it were a robotic procedure that had to be aborted for an open, there are still parts to this story that are either missing or just don't make sense. I hope we can see the whole picture at some point.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 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 capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 2/19/2009 10:24 PM (GMT -6)   
Thanks to all. By the way Ed C is the new name for old67. This friend is somewhat naive. He doesn't know his Gleason score nor does he know what his Pathology staging is. I tried to explain to him that he needs to be more pro-active and get the ball rolling with a PC oncologist. He said that he will be undergoing some tests (don't know what). He also seems to be content that he is feeling well and able to play golf while the cancer is progressing somewhere. His current post surgery PSA is 29 which indicates a major problem. I'm trying to get him to be more active but I don't see him enough to keep after him. He doesn't even have a computer nor does he use the internet. If he gets his pathology report I'll put the information on here for him.
Age: 67
5ft 10 inches 182 lbs
Retired in 2001 and living in Austin TX.
Dx 12/30/08
Robotic surgery performed on Feb 9th
Surgeon: Dr. Randy Fagin, Austin TX.
Negative CT scan and bone scan done on 1/16
PSA 3.5
Post op Pathology report:
Prostate weighed 57 grams
size:5.2 x 5.0 x 4.9 cm
10-20% involved
Bilateral
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
Lymph nodes: not dissected
seminal vesicles clean


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 2/19/2009 10:27 PM (GMT -6)   
By the way, I forgot to mention that his surgeon was none other that Dr. Fagin who did my Da Vinci surgery. I'm actually surprised that he did that knowing the size of the prostate.
Age: 67
5ft 10 inches 182 lbs
Retired in 2001 and living in Austin TX.
Dx 12/30/08
Robotic surgery performed on Feb 9th
Surgeon: Dr. Randy Fagin, Austin TX.
Negative CT scan and bone scan done on 1/16
PSA 3.5
Post op Pathology report:
Prostate weighed 57 grams
size:5.2 x 5.0 x 4.9 cm
10-20% involved
Bilateral
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
Lymph nodes: not dissected
seminal vesicles clean


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 2/19/2009 10:34 PM (GMT -6)   
Ed C = old67, great, now we have a name to a name. Still glad to know you Ed
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 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 capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 2/19/2009 10:37 PM (GMT -6)   
P.S> Does you friend realize that with such a casual attitude in that situation, he may be risking going over the line for treatments, and may reduce his long term chance for survival? Do you think he may be in a bit of denial? You really have me concerned about him.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 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 capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 2/19/2009 10:48 PM (GMT -6)   
Ed, I don't think your friend's attitude is all that uncommon. I think that the pro-active attitude found in the members of this forum is not the general rule out there. I know from personal experience that the majority of fellow PCa patients I come across have the view that all is in their doctor's hands and he, well, knows what's best for them. It almost seems to be "I don't want to know". The problem with that though, is it could cost you dearly. It doesn't mean the doctors not right, but we should really understand why he's right.
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 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 2/19/2009 11:05 PM (GMT -6)   
I agree about my friends attitude. For a while after the surgery he was very depressed and started taking anti depressant medication. Now that he is feeling better physically (no pain no incontinence) he is ignoring the big picture. He is going to an oncologist and I'm hoping that he will get some good advice and treatment.
Age: 67
5ft 10 inches 182 lbs
Retired in 2001 and living in Austin TX.
Dx 12/30/08
Robotic surgery performed on Feb 9th
Surgeon: Dr. Randy Fagin, Austin TX.
Negative CT scan and bone scan done on 1/16
PSA 3.5
Post op Pathology report:
Prostate weighed 57 grams
size:5.2 x 5.0 x 4.9 cm
10-20% involved
Bilateral
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
Lymph nodes: not dissected
seminal vesicles clean


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 2/20/2009 7:45 AM (GMT -6)   
Ed, we both know, that if one ignores the "big picture", they miss out on the whole show. Now is the time for your friend to be proactive and to know all he can possibly know. "I don't want to know" is the most classic form of denial. I am glad he is feeling good, i.e. no pain, etc, but that is another false hope if you have something terrible going on inside you. When my PC was dx, I had no symptons whatsover, never a prostate problem, no phantom pains, nice clean DRE each year. The only sign was at first a slowly but steadily rising PSA year to year, and then ultimately a rapidly rising PSA that led to the biopsies.

Hope you can to you friend and letting him know that he may be playing with fire, fire that he can't even see.

David
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 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 capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


LJF
New Member


Date Joined Feb 2009
Total Posts : 14
   Posted 3/8/2009 12:50 AM (GMT -6)   
THOUGHTS TO PONDER:

One thing your friend very likely realizes at some level is that this is Cancer with a capitol "C". If he wants to bury his head in the sand and not understand or not want to be part of the decision making process that may well affect the outcome of his life, that's his call to make.

I personally can't believe a specialist who used the Da Vinci approach doesn't know what the cancer status is or not know what is going on. That specialis more likely than not has at least has a well educated guess based on the scientific data already collected about your friend's status.

Sounds like your friend may just be simply overwhelmed by the current state of affairs and just can't "deal" right now. Until or if he is ready to rejoin the fight, and make no mistake it is a fight, there's not a lot you or anyone else can do to get your friend linked in to a reality most would think he needs to face. The best thing you can do is be his friend and listen to him when he wants to talk. You can't force him to want to tune in and deal with what is happening. Depression, Denial and Fear can be very very powerful.

As for the posted responses you see here, please realize these are individual "takes" based on an individual person's experience, thoughts , opinons, biases, hopes and fears. While some of the posts are highly technical, do realize no one is professing to be an expert in the field. No one can predict the future when you get right down to it. Choosing to be almost as well versed as the experts are as you may see reflected in some of the postings is a personal choice but not one suited to everyone and is not required as a participant in this Forum.

Don't feel compelled to share the Path findings either. Its not a critical component for this forum. Its natural to want to compare one's exact situation with someone else's but its not a requirement in order to join in. I would caution you as well Not to release your friend's personal medical history specific to this disease without his express consent. Instead, show him this forum and let him see some of the questions people with the disease are asking. At least he could hopefully realize he isn't alone in this and that there are other folks out there with a history perhaps similar to his who wouldn't mind sharing their personal experiences or responding with their thoughts and opinions.

Prostate cancer can be beaten or at least beaten back to the point where a person can enjoy and appreciate life . Your friend won't die tomorrow or next month but if he can't or won't act or chooses not to be a a fighter, there's not a lot you or anyone else can do to force him to act. Only way that can happen if he's declared mentally incompetent and to have someone else step in and make the tough medical decisions for him.

If your friend is open to a support group or counseling that might help him as well, esp to help him realize he isn't alone in his disease. The Internet can be a great tool in that regard as it is anonymous and doesn't require face-to-face contact. Its also a double edge sword at times with info overload.

If your friend is agreeable to having you speak to his specialist about what is happening, that might help as well as he might do better right now if you could be an info filter for him if he chooses to let you help in that way. That would require his written consent provided to his specialist.

Is this more of what you were seeking when you asked how to best help your friend?
Here's my two cents to your question.....

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 3/8/2009 9:12 AM (GMT -6)   
LJF, there you go again, another interestenly crafted posted that seems the purpose is to plant seeds of doubt in peoples mind's here. You don't seem to like or appreciate the format or protocal of this forum with your remarks.

Where are your stats on your PC situation? What was, if any, your treatment plan? What were the results? How do you stand now?

Without any of that, your opinions here seem harsh and unwanted in my opinion, and your words are certainly not a source of comfort or support. So what gives, what's your real angle for posting here?

David in SC
Age 56, 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 capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 

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