Interesting article: Surgery regrets, I want my prostate back

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pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 428
   Posted 4/28/2010 9:47 PM (GMT -6)   
Hi All,
 
Just saw this link on msnbc mens health...   It was an interesting read from the authors perspective... 
 
 
pasayten

P.S.  I am happy that I DO NOT HAVE my cancer filled prostate!


After 3-4 years of annual PSA 4-6, biopsy recommended
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx, approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
9/10/2007 Pad free and ED at 75% with 100mg Viagra generic
6/26/2008 2nd Post-OP PSA at 14 months...  0.02 
12/2/2008 3rd Post-OP PSA at 20 months...   0.03
10/30/2009 4th Post-OP PSA at 31 months...   0.13 (moved and diff lab)
11/3/2009 Retest at my original lab...  0.11  (followup with Doc sched 11/10)
11/10/2009 Discussion indicated biochemical reccurrence and need for salvage radiation treatment. 
1/21/2010 Another PSA test at 34 months...  0.14
1/26/2010 IMRT Salvage Radiation Treatment started
                  32 sessions for 64 gys total.
3/12/2010 Finished 32 sessions...  No side effects to date except a little
tiredness.  Slight changes in bowel movements the last week...  
4/8/2010  Pretty much all side effects (were minimal) are gone now and energy has returned.  Now just wait for the upcoming PSA test.
 

Post Edited (pasayten) : 4/28/2010 9:55:05 PM (GMT-6)


Worried Guy
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Date Joined Jul 2009
Total Posts : 3732
   Posted 4/29/2010 5:49 AM (GMT -6)   
An enjoyable read with no real surprises. (Just the fact that he did not have relations with his wife 2 days before the surgery. What kind of a monster... How does she sleep nights?)

I wouldn't want my old, rotten prostate back. With a PSA of 23, 7/12 cores hot, and 70% involvement, I figure it was quite rotten and beginning to smell.
If I could have swapped it out and replaced it for a new model I would have in a heart beat. Maybe that will be commonplace 20 years from now.
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 6=3+3. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23. Did I waste 9 months? Mtg 5/22.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05, 4/14 9 months - 0.04 and <0.01 with ECLIA.


Sunbird
Regular Member


Date Joined Apr 2008
Total Posts : 140
   Posted 4/29/2010 6:13 AM (GMT -6)   
Hey Pas,

That's a great story, and thanks for the link! No regrets for me either. I liked the author's take on "watchful waiting" where he said, "Wait for what?..... for cancer cells to colonize my spine"? The comment the author made when his urologist was probing his prostate was like a door bell being pushed on Halloween made me spit my coffee. You know how persistent kids can be pushing that door bell.
1996, Age 48, Stage III Colon Ca, Colon Resection followed by 18 chemo treatments.
 
2000, Colon Ca Metastasis to upper left lung lobe.  Lung lobe surgically removed.  24 chemo treatments scheduled.  Took 1, declined the rest.
 
9/08 PSA is 2.8, 12/08 PSA is 4.56??  Chalk it up to prostatitis due to urinary retention after Nissen Fundo Surgery.  VA docs prescribe 30 days of Septra.  Prostate feels normal.  PSA hovers around 4.1.  VA docs want prostate biopsy but can't seem to get me into the schedule.  Continue through Spring and Fall of 2009 thinking I have prostatitis.  Bacteria cultures are always neg.  PSA drops to 3.1 10/09.
 
12/09 Prostate Biopsy performed
3 of 10 cores positive, 5%, 25%, & 35%, 3 + 3= Gleason Six with perineural invasion.
 
Doc wants CT Scan due to prior Colon Ca. Findings: "The seminal vesicles are irregular & there is nodularity in the periprostatic fat such that local extension cannot be excluded.  Shotty lymph nodes in both groin measuring 2.3 cm."
 
Doc wants Endo-rectal MRI (OUCH!) Findings: Mild central zone BPH, no discrete focus of carcinoma is identified, no evidience of invasion into the periprostatic fat or seminal vesicles.  Normal size iliac chain lymph nodes.
 
2/08/10 Open RP surgery.  Findings: Gleason Six upgraded to Seven.  3 + 4, Stage pT2c, Bilateral w/perineural invasion, No pos lymph nodes,  margins uninvolved, no extraprostatic extension, no seminal vesicle extension,  39 grams, blood loss 1200 ml (didn't want a transfusion & didn't get one) nerve bundles spared bilaterally.  current age-61


Gleason7
Regular Member


Date Joined Feb 2010
Total Posts : 111
   Posted 4/29/2010 7:43 AM (GMT -6)   
As others have indicated, a very good read but with a different ending from what one expects. Also interesting was something I hadn't heard or read before in that cancer that may have spread outside of the lower portions of the gland are more apt to return causing problems. Expected to read that this guy actually felt he had made a mistake only to find out that while having ED problems and a leaker pad for incontinence as his only beefs he feels his decision was the right one.


74 years old / last PSA 12/10/09 6.5 / Biopsy 12/23/09 - 2 of 12 with 30% / 70% - Gleason 3+4=7 / enlarged prostate size of a lime / Henry Ford DiVinci nerve sparing 2/10/10 / - Pathology confirmed Gleason 3+4=7 margins and associated components clear......Five week PSA undetectable - zero pads night and day except when going out socially and then few if any sneeze leaks. ED? Where I was 12/09 or 50 MG Viagra.....Cannot say enough great things about my surgeon Dr. Peabody and the Vatikutti institute.

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 4/29/2010 8:28 AM (GMT -6)   

Interesting article.

Worried Guy, I didn't have relations with my wife for two months prior to surgery.  Some young idiot doctor at MD Anderson told her that it was "theoretically possible" for her to "catch cancer" from me.

Nothing since either.  After awhile, you just stop thinking about it much.

Zen9

Gleason7
Regular Member


Date Joined Feb 2010
Total Posts : 111
   Posted 4/29/2010 11:44 AM (GMT -6)   
Hey Zen9 I can relate to your note as my wife wasn't to keen on playing games either. Have to admit it would seem reasonable that fluids passing through or originating from a an organ containing cancer would perhaps pass on some cells although my surgeon assured us it wasn't possible.

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 4/29/2010 12:40 PM (GMT -6)   

Your wife's body's defense mechanisms would immediately destroy any cancer cells that might conceivably pass from you to her.  They wouldn't have the correct biochemical markers for her body and would be correctly singled out for destruction as "invaders."

Your body doesn't do it because it recognizes the cancerous cells as being your own.

Hope your wife got over her concerns!   smilewinkgrin

Zen9


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 4/29/2010 1:04 PM (GMT -6)   
Catch the cancer????? Surprised to hear such mishigas from a doctor at an institution with the reputation of MD Andersen. And I bet Dr. Logothetis would be pretty surprised to hear that one of his colleagues gives such advice!
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 4/29/2010 3:28 PM (GMT -6)   
Good article in that it covers the realities in a pretty straightforward way, without varnishing the truth either way. 
 
I felt for him on the marriage front.  I was in the same boat (since divorced).  Been dating again but without the blessing of an already established mutually supportive relationship, becoming sexually active is impacted at least as much in the sex organ between the ears as it is below the belt.
 
Of course, it could be worse.  Much worse.  As I frequently come back here to read the stories of others and remind myself.  Peace and good luck to all here.
51 YO
PSA at Dx: 8.2
DaVinci RALP: 10/31/08 -- Great MD in New Haven, CT
Negative margins, no extra-capsular involvement
One nerve spared
PSA at 0 for just over a year now.
 
 


CaPCa
Regular Member


Date Joined Aug 2007
Total Posts : 118
   Posted 4/29/2010 4:54 PM (GMT -6)   
I thought that the risk of tumor at the bottom (apex) had more to do with typical surgical margins in that area as opposed to anything inherently different in that part of the gland. In other words, cancer has no greater or lesser chance of escaping the prostate from the apex on its own accord than from other areas. Someone please correct me if this is wrong.

Sometimes I wish that I was "overtreated". If I truly believed that, then I wouldn't have the dreaded PSA anxiety.

CaPCa
Age:45 (44 when diagnosed)
Father diagnosed and cured at age 52.
08/21/07: Diagnosed with T1c cancer
1 of 12 biopsy cores positive; 10% tissue
Gleason score: 3+3=6
PSA level prior to biopsy: 4.3 (velocity < 0.4ng/ml)
10/19/07: da Vinci prostatectomy by Dr. Vipul Patel
              Difficult surgery due to prostate inflammation.
              Both nerve bundles spared.
              Spongy erections began within 24hrs of surgery!
10/24/07: Catheter out; down to 1 Serenity pad/day next day.
              Final pathology: neg margins, no capsular penetration,
              Gleason 3+3=6, 5% tumor involvement, multi-focal.
11/04/07  First usable erection with Cialis
11/22/07  Thanksgiving - Bye-bye, pads
01/17/08  First post-surgery PSA result: < 0.008 ng/ml
03/17/08  Erection quality mostly back to pre-surgery levels with Cialis;
              have not tried without meds yet.
04/23/08  Second post-surgery PSA result: < 0.008 ng/ml
07/30/08  Third PSA: 0.01 ng/ml
11/04/08  One year PSA: 0.01
              Still taking 10mg Cialis every other day - enjoying the results
              too much to stop yet.
02/07/09  Taking 5mg Cialis every other day - having too much fun to try
              to stop for now.
03/23/09  PSA: 0.02
10/19/09 PSA: < 0.1 (switched to "standard" assay)
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/29/2010 6:34 PM (GMT -6)   
Zen, my poor friend, that idiot dr. cheated you out of some good pre-treatment sex with bad advice like that. It's hard to believe that he actually said that.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 4/29/2010 8:29 PM (GMT -6)   
Purgatory,

I could tell you stories about my stay at that hospital that would make your hair stand up. Well, maybe not your hair, after everything that you have been through, but most people's hair ....

Zen9

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 4/29/2010 8:29 PM (GMT -6)   
Enjoyed reading the story. We all have gone through it. I'm glad I have a loving and caring wife who is very understanding.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
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 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 4/30/2010 4:29 AM (GMT -6)   
I miss mine everyday. I miss it even more when I am slap in the face with articles and news reports that say I was wrong in having it removed. But, I like the idea of having no worries about prostate problems of the future.

The good sex. The really good sex. I miss that the most.

My good friend battles an enlarged prostate daily. We take a two mile walk every morning. I can drink several cups of coffee before our walk, with no problems. He can hardly tolerate the tiny amount of water he uses to brush his teeth. Even then sometimes he has to race home for a tiny pee.

Would I have died from prostate cancer if I had done nothing? I just don't know. I'm sure I wanted to live with that unknown.
12/06/07 DaVinci and open prostate surgery after difficulties in breathing stopped the davinci.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 4/30/2010 6:00 AM (GMT -6)   
Zen,
I'm sure there is a special place reserved for that "Doc" in Prostate Hell.
What a raw deal.
Jeff

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6894
   Posted 4/30/2010 7:27 AM (GMT -6)   
Thanks for the link - it was worth reading. With my 9 of 12 positives, G 4+4 in most, I didn't find a place for doubt of my DaVinci, and still don't. I don't like the changes it brought, but we all are forced to establish a new "normal".

Drums
Regular Member


Date Joined Mar 2010
Total Posts : 134
   Posted 4/30/2010 8:10 AM (GMT -6)   
Really good article. Thanks for the post. Especially since I have my RALP scheduled for 19 May, the expectations are important to control. Thanks again.
Bill
Age 52, father died of PCa, PSA: 10/16/09 - 2.8; 1/11/10 - 3.8
Biopsy 11/25/09, 11 core samples - HG PIN on right side
Biopsy 2/17/10, 11 core samples - left side, adenocarcinoma, Gleason 6, one core at 5%
Notified of dx on 3/12/10 (27th wedding anniversary)
MRI 3/17/10 and bone scan, 3/23/10, indicate: gland volume is 27mL, PCa is confined to prostate, seminal vesicles and vas deferens are unremarkable.


wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 4/30/2010 2:55 PM (GMT -6)   
i would think it would be better start a PSA at 40 then look at rate of increase and not worry about a single test by itself or what the number is for the most part. That way you would catch the guys who have the really aggressive kind early. If not then these guys don't stand a chance.
12/06/07 DaVinci and open prostate surgery after difficulties in breathing stopped the davinci.


Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 5/1/2010 6:30 AM (GMT -6)   
My Dr started talking DaVinci as he gave me my results. Claimed there were no side effects then went on to tell me the side effects of all the other options. Doing nothing wasn't even an option. My DR neighbor practices nephrology and internal medicine. I told him the story he said he was not surprised since that's what my doc specializes in and that's where he makes his money. He told me to get all the results of my tests, scan and cat being done Tuesday and he'll look them over. Together we'll call his urologist friend and have him look everything over then I can make a decision on what is best for me. Told me not to get depressed and if I do give him a call. His parting words "almost every man dies with prostate cancer not from it".
Age 68 on 4/30/2010
weight 185
height 6'
Samples taken 4/19/2010
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%

PSA 3.5 Mar 19
PSA 2.5 Apr 4

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