First Post Op visit and think I am going nuts/the nerves are gone but not forgotten

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Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 12/19/2008 4:01 PM (GMT -6)   
Hi All,
Well today I went back to Orlando for my 8 week post op visit I have been feeling good no more burning, or running to the bathroom.  Only a slight leak once in a while if I sneeze.  First PSA undectable 0.1 and believe me I feel blessed.  However, today we did not see the doctor he was in surgery but saw his PA and it was more of an ED visit so she starts to tell me that the vigra prescribed was to get the blood flowing but really will not help with erections since I lost both nerve bundles.  Well my wife and I both were shocked since the doctor told my wife after surgery that both were saved and repeated this to both of us when he gave me my path report.  I said I think you are wrong the doctor did not tell us he took out the nerve bundles?  She said she had the sheet from the operating room and it states both were removed.  Said she would follow up with doctor but was sure we misunderstood.  My wife told her I don't think so since we both asked the doctor this question since it is a major issue.  My wife then questioned if they ever had the right path report and she said of course it is taken in the operating room and matched etc., etc.  I then told her that I have been having some minor erections not enough for intercourse but enough to indicted that blood was flowing she was very surprised and said that was unusal if both nerve bundles were removed.  So now what? I am sure they will never say the doctor wrote the wrong thing in the operating room so it had to be us.  So I guess I will never know one way or the other.  She said the doctor was going away for two weeks but to call and reminder her after the holidays to check with the doctor I am sure he is not going to remember me since he has done thousands of these operations and I am sure I am just a number.  smhair
Jerry
Age 69
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive for Prostate Cancer 12% of sample, Second option of biopsy from Methodist Hospital Houston same DX
Gleason Score 4+4 =8
Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Tumor size 2.9 x0.8 x 0.8 cm
Location: single focus, left posterior peripheral zone (pt2a)
Post Gleason report  3+3= 6
Lymph nodes on both sides negative
margins Negative 
Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/10/08 diagnosed with lymphocele 7.7 x5 pressing on bladder reason for urinating every two hours and leak is not  yet healed.
11/19/08 dry no more pads
12/2/08 first PSA <0.1


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/19/2008 6:16 PM (GMT -6)   

First, congrats on the zero club.   Glad to see it, along with progress in continence and recovery. 

There might be a chance that the answer to the nerve bundles being present or not is in the pathology report itself.  I know in mine-nerve sparing- it listed each seperate part of the anatomy removed with a description.  i.e. seminal vessels, prostate, lymph nodes.  If you have or can obtain a copy of the path report, it might say that the nerve bundles were examined, confirming what the nurse said, but if it doesn't mention it, it doesn't necessarily mean it was or wasn't removed, if you see what I mean.  

If you are seeing some erection function, then I would lean to the theory that the nerves are still intact.  Time will tell, hopefully. 


James C.         Age 61
Co-Moderator- Prostate Cancer Forum
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
16 mts: ED- Viagra, pump continues, no response- Trimix ..35ml x 2 weekly continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 12/19/2008 7:59 PM (GMT -6)   

 

James,

Thank you so much for your response I knew I would get more answers here then with the doctor that is suppose to be so great.  I  do have a copy of the path report and listed in my signature what it said I am not sure what to look for that would cover the nerve bundles.  I have never heard of such a thing I thought I went to one of the best doctors in this field and was happy with his report then go and find out that it was not correct not quite sure what to do at this point.  Of course, I am happy that my PSA is in the zero and that I am continent which I realize I am so lucky and that is the answer to our prayers especially at my age.  I am only upset that my wife and I were told one thing by the doctor twice and another by the PA.   If the doctor felt that my nerve bundles needed to be remove so be it and I can accept that if it would conrol the cancer just tell me one way or the other?  If the nerve bundles were removed would I be having these semi erections?  I do not know at this point what is normal or not normal.  The PA said this information would not be in the path report.  So if the report and doc disagree how do I know who is right?  Is there any test that can tell if they removed the nerve bundles or not?

Any info would be greatly appreciated.

 

Jerry

 

 


Age 69
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive for Prostate Cancer 12% of sample, Second option of biopsy from Methodist Hospital Houston same DX
Gleason Score 4+4 =8
Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Tumor size 2.9 x0.8 x 0.8 cm
Location: single focus, left posterior peripheral zone (pt2a)
Post Gleason report  3+3= 6
Lymph nodes on both sides negative
margins Negative 
Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/10/08 diagnosed with lymphocele 7.7 x5 pressing on bladder reason for urinating every two hours and leak is not  yet healed.
11/19/08 dry no more pads
12/2/08 first PSA <0.1


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 12/19/2008 8:35 PM (GMT -6)   
I think it's kind of unusual to go from a pre-surgery Gleason of 4+4 to post surgery of 3+3.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 12/19/2008 9:00 PM (GMT -6)   
Jerry1 said...
Is there any test that can tell if they removed the nerve bundles or not?
You've already done it :-)   Two months out, anything that qualifies as a semi-erection, with or without Viagra etc, means you still have a good degree of nerve function. Hence there is a strong chance that both nerve bundles were spared.
 
My pathology report makes no mention of nerve bundles even though mine were removed. Nine months out, I have nothing that is anything like a natural semi-erection. Nerves are quite slow growing, and if they grow back, I am hoping to see something happening at 18 months.
 
I'd rely on what your doctor told you, twice,  soon after surgery, while it was fresh in his mind. Better that they screwed up the recording than the surgery :-)
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 12/20/2008 12:16 PM (GMT -6)   
Jerry,

I think somebody goofed on the report. If not, you must have a wicked ability to heal! Get the story from the Doc at this point. He's responsible for the surgery, follow up, as well as for the accuracy of his own reports. It's his responsibility to handle the error. Accept no one else. I suspect it's a typo given what you say about how well you're doing.

Swim
 


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 12/20/2008 6:31 PM (GMT -6)   
Personally I would say I don't care that the doc is going away, there surely are phones wherever he is going. I suspect its a mistake on the report as others have said and the evidence indicates, but this crap is hard enough without mis-information. Keep your chin (and other bodily parts) up and have a happy holiday.
50 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
6 Wk PSA - 0 
So far, so good.  Next PSA in another 6 Wks
 


Bob D
Regular Member


Date Joined Mar 2008
Total Posts : 199
   Posted 12/21/2008 1:03 AM (GMT -6)   
Was she getting some sort of perverse pleasure telling you your nerve bundles were removed and leaving you hanging
without her calling the doctor to verify it? If you are getting starting erections so soon, I would bet you had your nerves spared. I had nerve sparing and had erections starting just five days post op.
When I read your post, I thought about the poor guy in Kentucky about 2 months ago. He went in for a routine curcumcision for a cronic infection, and the surgeon removed his entire penis. When he awoke from the anesthesia, his wife was crying and had to break the news to him. The doctor said he had penile cancer and had to perform the penectomy. ( I do not know why a biopsy was not done prior ).
No one likes surprises and all the medical professionals should have their facts straight before they tell you anything.
Sounds like you and your wife will be back "in action" real soon !!!!!! turn
 
    1. Age 59, psa 4.7 in Jan. 08. Biopsy: one positive sample out of 13. 1% of one sample cancer. Prostate removed on 3/5/08. Open Surgery. Northeast Georgia Medical Center, Gainesville Ga. Nerves spared. Cath out 12 days later. Continence good. No pads needed since 6/10/08. First PSA: Less than 0.1 on 6/17/08. First erection five days post op and have been improving well since then. Full erection now possible (less than four months post op) with the assistance of Cialis.  Post Op Biopsy : No malignant cells in lymph node. Gleason 3=4=7. Tumor on both lobes. Urethral margins/apex free of neoplasia. Right and left seminal vesicles free of neoplasia. No invasion of prostatic capsule of the resection margins are noted by the tumor. Tumor occupies 10 to15% of the prostate gland. Path staging T2c, NO, MX- Group staging II.  Focal areas of perineural invasion by tumor are noted. 80% natural erections and full erections with 10mg Cialis. 9/22/08-Took 10mg Cialis on Monday night, had very usable full hard erection at night, the next morning, and the following Thursday morning, 60 hours after original dose !! Orgasm quality Excellent.!!!!! I am pleased with the progress so far. Married to same wonderful woman for 39 years. She is still beautiful and sexy as ever. A great help in my recovery !!:


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 203
   Posted 12/21/2008 8:04 AM (GMT -6)   
Jerry1 said...
Hi All,
  My wife told her I don't think so since we both asked the doctor this question since it is a major issue.  My wife then questioned if they ever had the right path report and she said of course it is taken in the operating room and matched etc., etc.  I then told her that I have been having some minor erections not enough for intercourse but enough to indicted that blood was flowing she was very surprised and said that was unusal if both nerve bundles were removed.  So now what? I am sure they will never say
Jerry

Hi Jerrry ,
 
My educated guess in your  case scenario is that your nerves were efinetl saved , good  sergeon pride themselves peforming a succsful nerve sparing operation and disclouse it right aay to their patients , (mine did one day after the operation while in the hospital bed) and it took me  MUCH longer to ecen feel anything moving down there (6 months out) with the nerve sparing, and up hill since then, so you experiencing ANYTHING in that stage of your recovery just confirmed the Doc was right.
 
in addition reading your profile a contained Gleason 6 PC usually does not requir removal of the nerve bundles i had the same scenario as yours , and mine were spared , usually the nerve bundles are removed with a much more advanced cancer that spread beyond the prostate and at Gleason 7 or higher (in most cases, can be exceptions at times), however the only test to find out is the test of time, keep with the rehab and good work, keep on Pumping  (if you already got a VED) and keep us posted of your progress ..sems  we are all up for good news ...
GB smilewinkgrin
April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 12/21/2008 8:20 AM (GMT -6)   

 

Thank you all for your encouragement it seems crazy that I cannot get a straight answer from supposly one of the top nerve sparing surgeons who has done thousands of these operations.

The PA said the surgery report the one that is in the operating room is the what she is looking at and she said that it is always accurate.  So I am totally confused and at this point I cannot believe the surgeon would admit that the operating room report was wrong so I guess I have to just see what happens.  I order the pump and will begin that therpy and hope for the best.   I was having feeling in the little guy right away and it has not gotten smaller after the surgery and seems the same as before however, without hard erections so I am just going to assume they screwed up and see what happens.  I really have no other choice.  As I had said before the doctor also told my wife right after surgery that he had a very hard time taking out my prostrate that it was so large.  Then when he met with us both post surgery my wife asked about how large the prostrate was and he said not large at all fairly normal no problems great path and spare nerves and I should be fine.  When she questioned him again he said that the surgery after me had a very large prostate and he had a difficult time removing.  Kind of scary.

Thanks again for all you support I will keep you posted.

Jerry1  


Age 69
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive for Prostate Cancer 12% of sample, Second option of biopsy from Methodist Hospital Houston same DX
Gleason Score 4+4 =8
Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Tumor size 2.9 x0.8 x 0.8 cm
Location: single focus, left posterior peripheral zone (pt2a)
Post Gleason report  3+3= 6
Lymph nodes on both sides negative
margins Negative 
Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/10/08 diagnosed with lymphocele 7.7 x5 pressing on bladder reason for urinating every two hours and leak is not  yet healed.
11/19/08 dry no more pads
12/2/08 first PSA <0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25372
   Posted 12/21/2008 8:33 AM (GMT -6)   
Jerry1,

What a confusing story, there can only be one right version ultimately. Notice you had the robotic surgery, is it possible that your surgeon does so many that he's getting his stories/patients mixed up? I worried about that some when reading about these high production line surgeons. When my surgery was done, open rp, I was the only show of the day for my surgeon. His practice only schedues one open per surgery day, and with the limited robotics they are doing, no more than 2 per day, one at 0900 and the other at 1400. Guess every area of the country and doctors do things different. From reading your signature, looks like you are doing pretty well, that was fast getting over the incontinence part, especially since you are some 13 years older than me. And your gleason was downgraded, that was really good, considering how many times they are upgraded after surgery. I am sure you get the straight answers from your doctor at some point soon, facts are facts when you get down to it. Hope only the best for you as you continue your journey to recovery.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/21/2008 11:40 AM (GMT -6)   
This story made me go back and read my surgeons surgical report and my pathology reports. My pathology report does not mention that the nerves were spared, but the surgical report does. Interestingly the surgical report does mention no visible or physical evidence of seminal vessical invasion (SVI), and no obvious extraprostatic extention (EPE), though the surgeon does mention suspicious tissue near the rectum. He outlines careful dissection of tissue in that area so as to not affect the rectum function The pathology report was clear that both SVI and EPE existed and that there were positive margins. I believe, and it makes sense, the surgical report is what is most important in defining whether the nerves were spared. And the pathology report is what is most important in defining the disease progression. When my surgeon walked out of the surgery and updated my wife, his verbal analisys matched his dictated report 100%. When I asked him about the final pathology, he was clear to me that what he felt by touch is not a good biomarker for cancer in many cases. That the pathology was verified by three pathologists prior to speaking with me. He did recall that he preserved the nerves 8 days after surgery..

I would recommend you ask for the surgical report, and all associated reports, of your surgery to be sent to you, as I did. You should keep them for your personal records. You may also ask for the dictated recordings if they are avaiilable. Just in case they were mixed in any way. If he told you both after surgery that the nerves were spared, and the report says they were not, then, I would be a pest until you speak to him...

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2291
   Posted 12/22/2008 10:49 PM (GMT -6)   
Jerry--Congratulations on your first undetectable PSA! I strongly suspect that the report stating that the nerves were not saved was a transcription error. If both you and your dearly beloved remember asking and distinctly being told by the surgeon that they were saved, they doubtless were. I'd clarify this as soon as the surgeon returns. Best to you on continued progress!
PSA quadrupled in 1 yr (0.6 to 2.5)  
DRE neg  1 of 12 biopsies pos (< 5%) 
Open surgery June 06 at age 57
Organ confined to one small area Gleason 5   
PSA's undetectable  < 0.1  


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 12/24/2008 10:08 AM (GMT -6)   
Congratulations on the PSA test results. Given the confusion over what you were initially told and what the PA has now said, if this were me I'd place a call to the Urologist/Surgeon himself, ask that he return the call, and then ask him the question directly. I'd also, probably before calling the Urologist/Surgeon, ask my primary care physician to read the report and investigate the matter - and report back to me. I don't think too many folks - the lay person - understand these reports and given the occassional confusion or hurried situation we sometimes encounter in the specialist's office - getting confused isn't difficult to imagine. Have a great holiday!

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

 

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