Five Month Post Surgery Report

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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 4/13/2009 8:47 AM (GMT -6)   
Hello one and all,
 
Five months ago, I had my open surgery and just wanted to give a general update.
 
While I am well healed up from the surgery and incision area, I still get occasional pains or phantom pains in the area.  Especially if I over do lifting or excessive bending at the waist.  My back and shoulders are still strong, and I tend to go too far sometimes.
 
In the incontinence department, I tell people that I am "Cautiously Continent".  It took me about 2 months in that area before I became comfortable enough not to use any pads or diapers.  Was dry at night from the start, and mostly dry otherwise.  A lot of the incontinent ordeal for me was in my mind, more than my body.  I was so determined not to have any accidents that I obsessed over it.  (When you are OCD anyway, it can come in handy sometimes, lol).  I can hold now for hours, like before surgery, but if I were to push it too far, and if I started to let loose, there would be no way I could hold it back.  Kegals never did anything for me, so basically didn't do them after a couple of days.  When I go on vacation soon, being in a crowded plane with limited bathroom time, I do plan to where a Depends guard just in case (the mental thing again).
 
In the ED department, or should I say lack of it.  I am still amazed.  For those that don't know, all my left nerves were removed, and the right side was described as being heavily scarred and damaged, so my surgeon didn't mess with them.  After being on a catheter for 63 days, I was able to have natural errections right from the removal of the cath.  The dr. speculates that the extra cath time may have helped give healing time for the nerves, and also could explain a fairly easly time to getting dry.
 
After about 2 weeks, errections were back to pre-surgery days, sex drive back to about the same, no shame telling, that means about once or twice a week interest.  Can pretty well perform on demand, unless I am really tired.  Dr. still feels no need to prescribe pumps, ED drugs or injections if I can do all that on my own.  I agree, but consider it a miracle.
 
Only other problem and this is where each person is different, I still fight a lot of post surgery fatigue.  Since I am still unemployed (not my choice), it gives me some slack in this area.  I am not convinced still that I could work 40 hours work week, probably more like 20 -25.  But for those that don't know, I was still dealing with chronic fatigue syndrom from previous radiation treatments from another cancer bout 10 years ago.
 
I see my dr in about a month for my six month post surgery PSA check up, and yes, I have plenty of psa anxiety, enough to go around.  With a gleason 7 and a pre-surgery rapidly rising psa velocity, I can still only hope that the PCa was really contained.  Still kind of gun shy at this point.
 
So that's where I am at 5 months.  Wished I never had PC, but  I did/do, and all things considered, not much more I could have done different.  Still feel I have a first class urologist/surgeon with a very compassionate heart (well, as long as I have insurance, lol)
 
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
 
 


Gerbe
Regular Member


Date Joined Sep 2008
Total Posts : 42
   Posted 4/13/2009 4:21 PM (GMT -6)   
Purgatory (can I call you Purge for short?),
 
What a wonderful update, considering the extra cath time!  How much difference some time makes, and maybe there was a silver lining to the trial you went through. 
 
My hopes are with you on continued good news at your 6 month milestone.
 
gerbe
The past is gone, the future yet to come.  This moment, here and now, is nothing less than the totality of existence.  I can't control my life, but I can shape this moment.
Age 59
PSAs 1.6, 1.8, 2.0 at yearly intervals, mild DRE finding (hindsight unrelated) lead to biopsy
3/08 1st biopsy, 18 core. Pathologist 1, HPIN and ASAP, 0.5mm 1 core. Pathologist 2, carcinoma
7/08 2nd biopsy, 16 core. Pathologist 1, 1 core carcinoma. Pathologist 3, 3 cores carcinoma
12/22/08, Davinci at U of Washington hospital, Dr. William Ellis, 6 hr procedure, both nerves spared.
12/31/08 catheter out, dry immediately 
Final path report:
79 g prostate gland
<5% cancerous, bilateral, T2c, Gleason 3+4, margins & seminal vessels clear, 14 lymph nodes negative
Aftermath notes:
ED - some nocturnal erections even with catheter. 1st orgasm at two week mark. 50% erect.
1/10/09 - Lymphocele post-surgery complication.  Kidneys threatened. 2 days hospital, drain installed. 
1/22/09 - Drain blocked, CAT scan, repositioned, continue drain
2/10/09 - The lymphocele drain comes out.


sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 4/13/2009 4:35 PM (GMT -6)   
Great update David, I'll admit I worried about you there for awhile with that extended catheter time. glad your doing do good. Keep it up!
Age at DX 57
5-18-07 PSA 7.7
5-06-08 PSA 4.6  8% free psa, but stable
10-23-08 PSA 5.65 4% free psa
11-04-08 biopsy
11-11-08 2 of 12 cores positive
Gleason 3+3  6  stage t1c / post-op 3+4  7  stage t2c
CT and Bone scan negative
Da Vinci RRP 01-09-09
Catheter removed 1-15-09
Pathology Report says it's gone!
First Post-op PSA 2-17-09   0.00


smc64
Regular Member


Date Joined Jan 2009
Total Posts : 40
   Posted 4/13/2009 5:01 PM (GMT -6)   
Dave, I’m glad you’re e doing well. You contribute a lot here…there is something to be said for good Karma. Best of luck going forward.
Steve
Age 44, DX 12/08
Psa 2.6 free 11%
One of twelve cores pos. with 5% pc Gleason 6 3+3
RRP performed for 3/26/09 Dr. Libertino, Lahey Clinic
Post-op Path  3+3=6 pT2B, pNX, pMX
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4247
   Posted 4/13/2009 5:03 PM (GMT -6)   
David,
Good news, keep hanging in there.
JohnT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

JohnT


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 4/13/2009 5:44 PM (GMT -6)   
David,
Good news and update. Your recovery is amazing, I can't believe how quickly your became continent and had no ED. I'm still incontinent after8 weeks after catheter removal especially when i Play golf. I use one pad a day.
Age: 67
Retired in 2001 and living in Austin TX.
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
Dx 12/30/08
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09
Surgeon: Dr. Randy Fagin, Austin TX.
Post op Pathology report:
Prostate weighed 57 grams
size:5.2 x 5.0 x 4.9 cm
Bilateral 10-20% involved
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
Lymph nodes: not dissected
seminal vesicles clean
1st PSA test 4/7/09 result 0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 4/13/2009 5:58 PM (GMT -6)   
Thanks sandstorm, smc64, and JohnT.

Gerbe, you can even call me David, btw, the Purgatory nickname goes back many many years before I ever had PC

EdC - if I were to bend down real fast and pick up something heavy, I can and could have a mini squirt, but that is about the worse. I am not convinced my bladder capacity is anywhere near what it was pre-surgery, I will have to ask my dr. if one loses capacity in the operation. Sometimes, I still can't tell by feeling with an pee urge, if it is going to be a big pee or just a few drops, so I almost never take the chance to find out otherwise, lol. So yes, I go more often than pre-surgery, use to have the bladder of a thousand camels and could hold a full bladder for hours and hours. But not complaining a bit.

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
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 4/13/2009 9:02 PM (GMT -6)   
David,
I am exceedingly pleased to read of your great progress. Way to go mate and amy your future always be good news. Soon all memory of all those terrible catheter experiences will fade into oblivion where they rightly belong. yeah
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 4/13/2009 9:20 PM (GMT -6)   
Bill, when I look back, and its been about 3 months since the cath was out, don't know how I managed as well as I did with all that, and the endless bladder spasms, but I did. We each pay our own special price dealing with PC, and I guess that was my dues, hopefully paid in full
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
 
 


spisam
Regular Member


Date Joined Jan 2009
Total Posts : 47
   Posted 4/14/2009 8:22 AM (GMT -6)   

Dave, I am so happy to read about your great progress. You have always given me encouragement in my postings. With respect to you, good things happen to good people.

Sam


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 4/14/2009 8:33 AM (GMT -6)   
spisam thanks for the kind words, nothing especially wise or good about me, just easy for me to communicate my feelings, I guess. Hope you are still doing well in your own journey

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
 
 


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 4/14/2009 10:59 AM (GMT -6)   
Purgatory:

Wow, I've never really seen your whole PCa story in one spot before. Congrats on the recovery.

Personally, I'm not sure I'm ever going to get over this last little hump with the incontinence, but then, to be honest, I am not working at it very hard. I keep expecting a miracle healing - we'll see. One pad a day is not bad. If it bothered me more I guess I'd work harder at it.

(I still think you should write a book.)

Live on!
kcragman
Age: 53; 52 at DX
March 2006: PSA 2.5
Dec 2007: PSA taken for insurance application. I did not see the results until late
Jan '08 - after I was rejected. Their lab said PSA 4.5.
Feb 2008: PSA 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were
cancerous and the 6th was suspect.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.

Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph node and nerve samples taken, and appeared to be cancer free.

July 2008: PSA at 7 weeks was undetectable.
August 2008: PSA at 14 weeks (3 months) was undetectable.
Nov 2008: PSA at 6 months was undetectable.
Feb 2009: PSA at 9 months was undetectable.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 4/14/2009 11:18 AM (GMT -6)   
Thanks kcragman,

One pad a day, I think I could have lived with that. And yours still may improve over time, or even suddenly. And miracles can happen, that's for sure. That is how I honestly feel about the lack of ED in my case. My wife and I fully accepted the fact that I might not work down there ever again, or at least for a couple of years, but with our marriage of 35 years, we could both live with that if it meant they got the cancer. Everytime we do have sex, I am totally amazed that it's working at all.

And for all those that do wonder about post surgery orgasms, I can report, as had I been told in advance, they tend to get deeper, stronger, and longer in duration over time. Such as been my experience over the past 2 months. Even my wife has noticed the intensity and duration differnce when I let loose. Not trying to be graphic here, just descriptive. Once you get it out of your mind that you won't ejaculate anymore, and that takes time for us men, the rest gets better, and to be honest, it's nice not having a mess to deal with in one form or the other. In retrospect, I almos feel like the orgasm part is better than before, its like the ejaculate was diluting the power and feelings that I get now. Only way to relate, men, go back in time when you could have sex several times in a day or evening, that last one, where you were basicially out of fluids when you let loose, would feel so good, and you would be thinking, that it hurts good. That is kind of how I see it now post surgery.

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
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, August 17, 2018 1:38 PM (GMT -6)
There are a total of 2,993,757 posts in 328,072 threads.
View Active Threads


Who's Online
This forum has 161243 registered members. Please welcome our newest member, Rana258.
295 Guest(s), 10 Registered Member(s) are currently online.  Details
81GyGuy, mattamx, PeterDisAbelard., sebreg, nonames, Pratoman, sierraDon, edgaroo, Union98, straydog