50; New Member and starting the journey

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BDCyclist
Regular Member


Date Joined Jun 2011
Total Posts : 182
   Posted 6/27/2011 7:17 AM (GMT -6)   
I turned 50 this year (04/11) and was delivered the present that no one wants.  I had my biopsy this month and was diagnosed with PCa with GS 6 (3 + 3), 9 of 12 cores positive, ranging from 5% to 40% in both lobes, no PNI seen, latest PSA 4.2.  I'm waiting for DaVinci surgery in August.  I was presented with the different options for treatment, but for someone my age and with the biopsy results, surgery was suggested as the best treatment (both short-term and long-term).  No scheduled bone scans, etc. as the Uro stated that it was less than 1% that the PCa has spread and most likely would not learn anything from them.  Although I'm satisfied with my doctors, I wonder if I should get a second opinion. 
 
I'm thankful that a friendly cardiologist convinced me to start taking Crestor for my cholesterol a few years back that required six month blood screens for liver enzymes that included a PSA test.  Trying to stay positive and learn as much as possible without it fully consuming my everyday life, however, the mind does wander (like with every ache, soreness or pain).  Committed to beating back this 50th birthday present and returning it.
 
I'm glad I found this site!!!!  It looks like my signature information has not yet taken when previewing the post but I think that I have given most of the known stats above.  Too new to the site, I guess.

_______________________________________________________________
Age 50 Dx 06/11
PSA 06/09 1.69; 08/10 2.94; 10/10 2.71; 02/11 2.63 & 2.96; 05/11 4.2
DRE negative
Biopsy 06/11: 9 of 12 cores positive 1-40%; 2-20%; 3-10%; 3-5%; 1 high grade PIN
GS 6 (3 + 3), Perineural invasion negative
Clincal T1c
Awaiting DaVinci surgery 08/11

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 6/27/2011 7:24 AM (GMT -6)   
Welcome to the site that no one wants to be a member of...
 
It sure wouldn't hurt to talk to other docs... But it can get confussing as they each have their own different opinions.

HD_Rider
Regular Member


Date Joined Apr 2011
Total Posts : 416
   Posted 6/27/2011 7:39 AM (GMT -6)   
Welcome BD,
 
Although I didn't want to be a member of this prestigious club, I too found myself here.
 
Your stats are not that far off from mine and it appears you have embarked on a similar journey to my own.  I was diagnosed in April and had my RALP on June 9th. 
 
Although a second opinion on the biopsy is always wise, just be careful you don't fall into the trap of "information overload / analysis paralysis."  It was one of my short-comings that made waiting for the surgery quite difficult.  It sounds like you've already made your decision as to your treatment.  Learn all you can about pre-op and post-op care and you'll get through it just fine.
 
And you've found the best place on the 'net to ask for guidance and support.  There's a lot of great and experienced people here who are only too willing to share their experiences and help you along the way.
· John (HD_Rider)
· Age: 49
· PSA: 3.5, 6/07; 4.5, 3/11
· Biopsy, 12 cores: 04/13/11
· Dx: Gleason 3+4=7, 04/19/11
· DaVinci: 06/09/11; cath removed: 06/17/11
· Post-Op Report: pT2cpN0, Gleason 3+3=6, EPE+, PNI+, SVI-, LNI-
· PSA: 07/25/2011

James C.
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Date Joined Aug 2007
Total Posts : 4463
   Posted 6/27/2011 8:10 AM (GMT -6)   
BD, welcome. Sorry you have to be here, thanks for sharing your story with us. Hang around and keep us informed as to your progress during your Journey. Any questions, feel free to ask.. cool
James C, 64, East TN
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% inv, lf. lobe, GS6
9/07: Nerve Spar. open RP, Path: pT2c, 110 gms., clear except:
Prob. microscopic inv.-left apical margin -GS6
3 Years: PSA's .04 each test until 4/10-.06, 9/10-.09, 12/10-.09, 2/11-.08, 5/11-.08
Bimix .30

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 6/27/2011 8:50 AM (GMT -6)   
Welcome to the Forum,

Not pleasant to get such news at the same time as having the 50 milestone, (I too has a bad PSA result when I'd only gone to the doc for a check-up to get my cholesterol/sugar etc checked!)

People our age are meant to have loads more years ahead, and this is a reason many uro's suggest surgery in preference to other treatments. (That said, my first uro was also worried that the likelyhood of ED and incontinence would not be good for my quality of life)
One thought is that if it comes back further down the road you still have the otpion of Radiotherapy available whereas if you have RT first then surgery is not usuablly possible at a later date. But many here seem to have been getting good results from a combination of interal seeds and external RT.

I did not really choose to get a second opinion it was simply that my first uro did not do the Da Vinci surgery so I switched to one that did, and he checked over everything too. I think a second opinion can be wise, but rushing about getting multiple opinions is not such a good idea as it can cause information overload. (And I'm just an amateur expressing a non-expert opinion)

Good luck with your journey.

Alf
Age dx 48
Apr 09 PSA 8.6
DRE neg
Biop 2/12 pos
Gleason 3+3
Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
Nov 09 PSA 0.1
Mar 10 PSA 0.4 sent to RT
13 Apr CT
RT 66Gy ends 11 Jun 10
Tired + weird BMs
Sep 10 PSA <0.1
Jan 11 PSA <0.1
Apr 11 PSA <0.1
Erection OK

Sagittarian
Veteran Member


Date Joined May 2011
Total Posts : 546
   Posted 6/27/2011 9:00 AM (GMT -6)   
You will find many men here with similiar age, treatment choice, PSA, and
biopsy results.  We are on many stages in the process, and can help you
on what to expect.  Not too long ago, several of us went through the
"waiting game".  Waiting for the surgery, pathology results, and first PSA
results is no fun.  However, you are now pretty much on auto-pilot.
Stay active to get your mind off of it, long idle time compounds anxiety.
Glenn-AGE-53,NJ, PSA-4.2, FPSA-7%
4/09/2011 - Biopsy, 8 NEG, 4 POS (left), 2(3+3), 2(3+4)
5/23/2011 - Da-Vinci Surgery, Right Nerves Spared, Partial Left
5/25/2011 - PATH, pT2c, 4+3, 25% cancer,Confined, Margin-Lymph-Seminal NEG
5/31/2011 - Catheter Removed
6/01/2011 - UTI, CIPRO 500mg 2 a day for 10 Days
6/10/2011 - No ED, Stress Incontinence
7/12/2011 - First Post Surg-PSA test

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 6/27/2011 9:03 AM (GMT -6)   
Hi BD

My husband got diagnosed at 52. Not something you really expect is it?

Best tip I can give is to read read read. Patrick Walsh's book is a great start. Another tip is to get a second opinion on your pathology results from specialist labs such as Bostwick or Epstein. An early lesson for us was that the hospital pathologist who did the first report got it wrong. Reading prostate biopsies is almost an art, you need someone who as seen thousands of biopsies evaluating your slides. Arranging this is actually quite simple. The one reason I would do this in your specific case is to rule out the presence of Gleason 7 cancer - which is a completely different kettle of fish to Gleason 6. You want as much info as you can before surgery as it is a one shot deal.

Regards,
An
Nb: your doctor is right not doing a bone scan for a Gleason 6 case.
Husband's age: 52. Sydney Australia.
Family history: Mat. grandfather died of PC at 72. Mat. uncle died of PC at 60. He has hereditary PC.
PSA: Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA 27%)|Feb10 - 4.03 (free PSA 31%) |Jun10 - 2.69. DRE normal.
Biopsy 28Apr10: negative for a diagnosis of PC however 3 focal ASAPs “atypical, suspicious but not diagnostic” for PC. Review of biopsy by experienced pathologist, 1/12 core: 10% 3+3 (left transitional), 1/12 core: ASAP (left apex)
Nerve sparing RP, 20Aug10 with Dr Stricker. Post-op path: 3+4 (ISUP 2005). Neg (margins, seminal vesicles, extraprostatic extension). Multifocal, with main involvement in the fibro-muscular zone. T2C.
Post RP PSA,
Lab 1: Sep10 – 0.02|Nov10 – 0.03|Dec10 – 0.03|Feb11 – 0.03
Lab 2: Nov 10 - 0.01|Dec10 – 0.01|Feb11 – 0.01|Apr11 – 0.01

Post Edited (An38) : 6/27/2011 8:08:51 AM (GMT-6)


Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 6/27/2011 7:48 PM (GMT -6)   
BD- Check out the link below, its a site which helped me greatly when I was first diagnosed, particularly when my first concern as is the concern of most when first diagnosed "How long have I got'?
Hit the panic button, its a good read and a great site, to visit on a regular basis. Alot of guys there too, with a wealth of knowledge and experiences.
Cheers Kev.

http://www.yananow.org/
Kev 53yrs [Gold Coast Qld, Australia]
PSA 4 Gleason 7 [4+3]
RP 24/12/08 Dr Philip Stricker [Sydney]
Stage 2 Tumor 7% Margin status- Focal Involvement
Fully Cont. ED- 90%
PSA @ 2.5yrs <0.01
"Every-day in Every-way I Get Better"

BDCyclist
Regular Member


Date Joined Jun 2011
Total Posts : 182
   Posted 6/27/2011 9:24 PM (GMT -6)   
Thank you all for your thoughts and words. The first time I read the posts, I must say that I got a little misty eyed. I found it real encouraging that so many people would take their precious time to view and/or post a reply. I wasn't sure what to expect. I'm sure glad I took the initiative to post. I look forward to being a forum contributor as I progress on my journey. Patiently and anxiously waiting for August.
Age 50 Dx 06/11
PSA 06/09 1.69; 08/10 2.94; 10/10 2.71; 02/11 2.63 & 2.96; 05/11 4.2
DRE negative
Biopsy 06/11: 9 of 12 cores positive 1-40%; 2-20%; 3-10%; 3-5%; 1 high grade PIN
GS 6 (3 + 3), Perineural invasion negative
Clincal T1c
Awaiting DaVinci surgery 08/11

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3895
   Posted 6/27/2011 9:43 PM (GMT -6)   
Surgery is only as good as the surgeon performing it..There are surgeons and then there are prostate specialists who are surgeons..I would try to find one with above average results..I must agree that at age 50, G-6, PSA 4.6, surgery is STILL probably your best choice..While radiation is making rapid advancements, you are a little young to be taking a big dose without consequences 10, 15, 20 years down the road..It's nice to have it as a backup should surgery fail, as mine did, but your case and mine are completely different..Read Walsh's book while you are waiting and yes, it's worthwhile to get an expert second opinion on your biopsy slides..

The best of luck to you...
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 6/27/2011 11:36 PM (GMT -6)   
BDCyclist said...
I turned 50 this year (04/11) and was delivered the present that no one wants. I had my biopsy this month and was diagnosed with PCa with GS 6 (3 + 3), 9 of 12 cores positive, ranging from 5% to 40% in both lobes, no PNI seen, latest PSA 4.2. I'm waiting for DaVinci surgery in August. I was presented with the different options for treatment, but for someone my age and with the biopsy results, surgery was suggested as the best treatment (both short-term and long-term). No scheduled bone scans, etc. as the Uro stated that it was less than 1% that the PCa has spread and most likely would not learn anything from them. Although I'm satisfied with my doctors, I wonder if I should get a second opinion.



I'm thankful that a friendly cardiologist convinced me to start taking Crestor for my cholesterol a few years back that required six month blood screens for liver enzymes that included a PSA test. Trying to stay positive and learn as much as possible without it fully consuming my everyday life, however, the mind does wander (like with every ache, soreness or pain). Committed to beating back this 50th birthday present and returning it.



I'm glad I found this site!!!! It looks like my signature information has not yet taken when previewing the post but I think that I have given most of the known stats above. Too new to the site, I guess.



prostateimplant.com/top_3
location: Batavia, IL
dx age 57 2/2010 PSA 8.2
biopsy 2/2010 - 2 of 8 left & 2 of 8 right positive, Gleason 3+4=7
attended support group - advised to get a second opinion
second opinion from Johns Hopkins 4+4=8
PSA 15 4/2010
5 weeks IMRT 4/2010-6/2010 at Copley Hospital in Aurora, IL
91 palladium 103 seeds 7/2010 at Chicago Prostate Center, Westmont, IL
PSA
Oct 3.97
Dec 2.78
Mar 2.42
Jun 1.77

Post Edited (fulltlt) : 6/27/2011 10:39:26 PM (GMT-6)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 6/28/2011 6:17 AM (GMT -6)   
BD, sorry the Big 50 brought such unpleasant news for you! My husband, diagnosed at age 57 with a Gleason 3+4 did not have a bone scan either as the urologist felt it wouldn't tell him anything. The only test other than the biopsy was a CT scan taken right before our consultation to discuss the results of the biopsy and treatment options.

You should do fine, and we hope you stick around and keep us posted on your journey. We're here to answer your questions and to walk with you for as long as you need us.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of posterior extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA 0.0 thru July 2009. August 2009 - 0.1, September 0.3, October 0.0. Last PSA in April 2011: 0.02

GTOdave
Regular Member


Date Joined Oct 2010
Total Posts : 175
   Posted 6/28/2011 6:18 AM (GMT -6)   
BDC, here I am, 4 months post-op (DaVinci as well), and my only reminder of my surgery is six small purple scars. Nothing hurts, no leaking, ED almost a non-issue (but I have nobody to use it on , alas).

This procedure, done by an expert, is nothing to be afraid of. As I fired my first uro, you too must be certain that you are in the best of hands. Experience counts.

If you track through this disease is like mine, around November, your visits here will diminish, as you will both feel and be better. Sadly, the guys who linger here for years are those whose disease has progressed. For us fortunate (post) G6 guys, that rarely happens.

Good luck!

Dave

rcroller
Regular Member


Date Joined May 2011
Total Posts : 327
   Posted 6/28/2011 6:38 AM (GMT -6)   
BD, not much to add other than to welcome you, reinforce what others have said about educating yourself, and picking the best possible surgeon for your procedure. Wishing you the best in your journey. May it be a short and successful one!
Age 53- PSA 2/11 3.5
4/21/11 BX Path Report: 3 of 12 Left PCa , 3+3, 3+4, 4+4
4/29/11 Received PCa DX, G-8
5/18/11 open RP Performed, Right nerve bundle spared
5/24/11 Post Op Path Report: G-7(4+3) 7%, pT3a N0MX, EPE, +PNI, + Left margin, -SVI
6/1/11 Cath removed, Incontinence-No, ED-Yes.
6/16/2011 First Post-Op PSA: <0.1

Snowbound
Regular Member


Date Joined Jun 2011
Total Posts : 224
   Posted 6/28/2011 6:59 AM (GMT -6)   
I was the same age as you when I started in on this. It was just a year ago that I went in for a routine physical and found an elevated PSA. It was a very stressful 6 months going through the various tests then waiting for the surgery, but I'm on the other side and feeling great. I'm feeling better and have more energy than I have in years. Good luck with your recovery!
Age 50
PSA 5.43 at June 2010 physical
Biopsy: 8 of 12 samples positive, 75% in 1 core. Gleason 7
Radical Prostatectomy 12/3/2010
DIC complications during surgery (17 units blood/plasma)
Pathology: 3.5cm tumour, no capsular invasion, lymph nodes negative
Catheter removed 12/26/2011
PSA currently undetectable!

BDCyclist
Regular Member


Date Joined Jun 2011
Total Posts : 182
   Posted 6/28/2011 7:24 AM (GMT -6)   
Thank you all for the valuable information and encouragement.  Most of you talk about experienced uro or surgeons.  Other than asking the doctors themselves, is there a way to get information from another source?
Age 50 Dx 06/11
PSA 06/09 1.69; 08/10 2.94; 10/10 2.71; 02/11 2.63 & 2.96; 05/11 4.2
DRE negative
Biopsy 06/11: 9 of 12 cores positive 1-40%; 2-20%; 3-10%; 3-5%; 1 high grade PIN
GS 6 (3 + 3), Perineural invasion negative
Clincal T1c
Awaiting DaVinci surgery 08/11

GTOdave
Regular Member


Date Joined Oct 2010
Total Posts : 175
   Posted 6/28/2011 9:58 AM (GMT -6)   
BDCyclist said...
Thank you all for the valuable information and encouragement. Most of you talk about experienced uro or surgeons. Other than asking the doctors themselves, is there a way to get information from another source?


You have to ask to get the info. Be sure the doc was first proficient in the open RP procedure. Ask how long and how many robotics he's done. If that number is under 250, find someone who's done more.

Know that many urologists do surgical procedures other than robotic RP's. The number could be low because they may specialize in something else. Doc's today are used to patients being direct and frank in the questioning of their skills and experience. Don't be shy. Your future is at stake.

axle
Regular Member


Date Joined Feb 2011
Total Posts : 35
   Posted 6/28/2011 10:20 AM (GMT -6)   
BDCyclist said: Most of you talk about experienced uro or surgeons.  Other than asking the doctors themselves, is there a way to get information from another source?
 

Your question is a great question and one I researched before my DaVinci procedure.  In the early time period of learning about PC, treatment options and consequences it is difficult to assess opinions about different doctors and their skills.
 
In the 2 years leading up to my diagnosis and surgery I met with 4 different Urologists and my local GP.  The first Uro to detect a node on my prostate during a DRE was with a non-profit organization in AZ called Prostate Onstite Project (POP).  When I followed up with a regular Uro specialist he confirmed the abnormal DRE but did not think it necassary to do a biopsy.
 
I discovered some internet MD Reviews that rated this doctor as "old school" and with below average patient reviews.  Even with me finding out that he was reviewed as below average, I did not increase my sense of urgency to investigate my abnormal DRE.  That was probably a mistake that allowed my PC to progress to pT3b but I will never absolutely know that for sure.
 
A year later, the POPs Uro again detected a node on my prostate and my PSA increase a little.  This Uro made a point of increasing my sense of urgency.  He was very concerned and very knowledgeable.
 
The next Uro I met with was very good.  He did the biopsy that confirmed the PC.  He said he had done about 200 DaVinci procedures.  I attempted to do some internet research on him but could not find much information.  When I pressed him for his skill level, he told me he wished he could tell me the names of some of his patients that were all doing fine but he could not do that.
 
I contacted a friend of mine that I knew had been down the PC path and talked about PC options with him.  All this was before I found this PC Healing Well forum.  He had selected the DaVinci option from a different Uro.  I did some internet investigation into this surgeon and discovered he was very experienced with the DaVinci and had been doing that procedure for about 10 years.  I made an appointment with him and subsequently went for it.  This Uro did interoperative biopsies and removed the seminal vesicals.  I do not know if all Uros do this regularly but I am very pleased that mine did this.
 
From my perspective, prostatectomy, as well as the other PC treatment options, are high stakes procedures so I wanted to give myself the best chance possible.  Before my DaVinci prostatectomy I knew that every individual PC case is different and that I could possibly end up incontinent, ED, and/or still having PC.  But, I, and as we all do, wanted to give myself the best chances for the best outcome.
 
It took me 11 weeks to attain full continence and that is great.  At 6 months post-op I am still ED but there occasionally is some moderate wood.  And best of all, I had negative margins and my first PSA was undectable.
 
In hindsight, I have learned much more about PC and treatment options since my DaVinci than before my operation.  I kind of wished I researched the various radiation options more prior to my procedure, but I am very pleased with the treatment choice I made.
 
Other than general internet searching, knowing other guys that know specific Uros, and asking the Uros themselves, I do not really know how to find out more information about specific Uros or ROs.  There are good lists of questions on this site that others have posted that can help you with your research.
 
Hope this helps a little,
Rob in AZ
Age 58 @ DX; da Vinci on 1/26/2011
PSA History: 10/2005 = 1.7; 10/2007 = 2.8; 10/2009 = 3.6; 10/2010 = 4.9
Abnormal DRE in 2009; Increasingly abnormal DRE in 2010
Thank you POPs!
Biopsy 11/2010: GS = 3+4; 5 of 12 cores pos @ 40%
Post-OP pathology: GS=3+4; tumor = 35%; pT3b; SVI+; EPE+ R. bladder neck; margins neg.
Post-OP PSA 4/13/11 = <0.1
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