Botched then covered up robotic procedure.

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gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/19/2009 2:33 PM (GMT -6)   
Hi all,
 
I have just found this forum, wish I had thought to look for such a community before commencing a treatment.
 
My family Dr. ordered a PSA and DRE for me two years ago as part of a routine physical.  I was 48 and in good health, 72", 200 lbs, fit and active.  The DRE was unremarkable but the PSA returned over 8.0.  He administered a course of antibiotics and retested about a month later and there was only a slight decline in PSA so he referred me to an Urologist.
 
The Urologist performed another DRE and noted a slight abnormality and ordered an 8 core biopsy.  The biopsy disclosed 15% cancerous tisssue in one of the eight cores, gleason 6.
 
By this time I had been completely through the Walsh book and knew that I wanted a radical, this is also what the Dr. suggested.  I had a PET scan and an abdominal CT both negative.  I scheduled for a robotic radical for July 30.
 
The robotic was performed as scheduled the night of the surgery my pain was not managed well and I was unable to sleep so I was kept a second day and night.  The second night went much better and on the third morning I was able to get up move about and shower.  I was discharged that afternoon.
 
The foley was removed 10 days post surgery.
 
The first post surg PSA was taken about 45 days post surgery and returned 1.8.  The Dr. advised me that this meant the cancer had escaped the confines of the prostate and that he recommended IMRT and hormone ablation.  He administered a 30 day dose of Lupron that day.
 
I saw the radiation oncologist that week, he also recommended the IMRT and ordered a prostascint scan to rule out metastasis.  The prostascint returned negative for distant disease and so we scheduled IMRT to commence last week in October.
 
30 days after the first Lupron injection I was given another, this one a 90 day dose.  The Lupron was awful, it gave me hot flashes, reduced my energy level to almost nothing, caused me to gain wt., gave me insomnia, caused me to become alternatively morose and agressive, and interferred with my ability to comprehend.
 
The IMRT wasn't too bad until about week 5 at which point I had extreme urinary and fecal urgency, burning upon urination, inflamation and bleeding of hemroids, and blood in my stool, various meds were administered such as steriodal suppositories, creams and pain meds which helped with this, also an oral called peridium which helped with the urinary pain.
 
On 01/23/08 I experienced a total and sudden urinary obstruction, it turned out to be scar tissue caused by the radiation.  I was seen in the emergency room where they tried IV morphine, lydocanine locally, IV demerol, and more IV morphine, they had a heart and resp monitor on me and kept telling me to concentrate on breathing.  None of this relieved the pain and they were unable to place a catheter.  I was taken to the operating room for an emergency cyctoscopy to relieve the obstruction, I spent that night in the hospital and was sent home late the following afternoon with my old friend foley.  The cathedar was removed 10 days later.
 
My first post radiation PSA was taken in 04/08 and returned 1.0.  The Dr. was not concerned and said it would likely decline.  The next one was 07/08 and was 1.4.  At this point my Urologist referred me to MUSC (med university of SC)
 
The MUSC Dr. did a DRE and ordered a prostascint and sent everything to their tumor board for evaluation.
 
I also made an appointment with Duke as my family Dr. advised that the situation was too serious to rely on only one treatment recommendation.
 
The Dr. at Duke reviewed my records and advised it was her opinon that I had a case with micro metastasis and that she would recommend hormone ablation at such time as the rise in PSA warranted.  She advised no further diagnostics and was convinced of her prognosis.
 
Shortly after seeing the Dr. at Duke I recieved the results of the tumor board at MUSC.  They advised me that the original surgeon had left a significant portion of my prostate and that this could be the source of the PSA.  They further advised that surgery was no longer a viable option due to the IMRT, and that if this portion of prostate should need to be removed I should consider cryoablation but that I should be advised that even the cryo could have profound ill side effects because of my status post IMRT.
 
By this time I had been doing more research into other forms of treatment and was seen by another Dr. at Duke who advised a clinical trial if my PSA continued to rise.  This Dr. concurred with the other Dr. at Duke that my cancer at this point was incurable and that we should pay no attention to the portion of prostate remaining.  By now it is late September of 08 and the most recent PSA is 1.6.
 
So I begin doing research into clinical trials.  of the hundreds going on in the area of prostate cancer I found only about six for which I met enlistment criterea as most required patients with hormone refractive or metastatic progression.  I do find reference to a procedure called HIFU (high intensity focused ultrasound) a procedure approved in many overseas countries as a primary procedure but not yet approved here.  By now it is early November and my latest PSA is 1.7.
 
I find a Dr. in Florida who practices conventional urology and also specializes in the HIFU.  I forward records to him and ask given the negative whole body scans is it possible that the remaining prostate is the source of the PSA.  He responds that he has seen such instances and that he advises a saturation biopsy to determine the nature of the remaining tissue.  By now it is mid December and my most recent PSA has remained at 1.7.
 
On 12/21 I am seen in the Dr.s office for a DRE and exam he also takes urine post the DRE for a test little used here called PCA3 a much better gauge of local prostate cancer than PSA.
 
on 12/24 the Dr. performs a saturation biopsy taking 36 cores,  a week or so later I have the results 24 cores showing normal prostate tissue capable of expressing PSA and a return of negative on the PCA3.  All of this leads this Dr. to conclude that while I remain at high risk for recurrence he does not believe there is an ongoing cancerous process.  We will continue to monitor PSA every 6 months, if he is right it should be stabilizing where it is which roughly equates to the 10 to 17 grams of prostate I still have.
 
I have forwarded the whole to a good medical malpractice firm.  I believe that the Dr. knew he botched the surgery, afterall he delivered only 7 grams of tissue to the lab when the prelim reports on me stated I had a mildly enlarged prostate, should have been around 20 grams or more.  I think he sent me to radiation believeing that would shut down the production of PSA and I would have never been the wiser.  I only learned all of these facts after the radiation failed to control the PSA.
 
I continue to have urinary urgency which requires the use of pads, on usually gets me through the day.  It was supposed to be a nerve sparing procedure but I cannot have either a spontaneous erection or one with the use of oral agents so I am left to believe the nerves where either severed or severely damaged.  Tri-mix caused accceptable but very painful erections so I am using bi-mix with reasonably good results except now am beginning to experience curvature.
 
I thought I had researched and understood a lot before going forward with treatment, the big mistake I made was in trusting my care to the Urologist after it was clear the surgery had not effected a cure.  Had I started looking at all of the medical records before beginning the IMRT I think I would have uncovered the failed surgery and would have taken a substantially different route of treatment from there.
 
Scott
 
 
Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 1/19/2009 2:44 PM (GMT -6)   
Scott, your story is incredible and hard to read. It's like everything that could go wrong, went wrong. First thing to hit me, was how experienced was the sugeon suppose to be be that did the robotics? The next thing, what was the post surgery pathology report like? I don't see that mentioned above. That should have told your surgeon a lot at that point, instead of waiting for the first post surgery psa to take place. Not second guessing you or your doctors, just trying to piece it together.

Glad you found us here, great place to be if you have PC. I am sure many others will ask questions and try to figure out what happened here. I am very sorry you have been through all that you have so far, that's a lot to deal with.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, 40 - 90%, G 4+3 & 3+4
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, Catheter out on 12/15/8. Stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08. Emergency room put in Catheter # day 45, 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/13/9 - removed blockage, put in Cath #5, 1/19/9 -out
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grams, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 714
   Posted 1/19/2009 2:47 PM (GMT -6)   
Scott,

That is a heartbreaking story. Even for people who are cautious, it sounds like this doc was clever in hiding in the grey areas. I hope you get better care in the future. Please keep us posted on your medical progress, and legal progress too.
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
pT2c; lymph nodes negative; microscopic margins
next PSA 1/22/08


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/19/2009 2:47 PM (GMT -6)   
gpg. Welcome to HW and thanks for sharing story. It's tales like this that reminds us that there's always gonna be a minority of cases of treatment where things go wrong. I don't know if we can ever prepare and research enough to eliminate the results of an injury such as yours. I hope you will hang around and share with us your Journey as you go down the road.
James C. Age 61
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/07 Nerve sparing open Retropubic Radical Prostatectomy
9/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 12 mts.-.02, 16mts.-?


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/19/2009 2:53 PM (GMT -6)   
Hi Scott,
What a story! It's hard to believe that a doctor would only partially remove cancerous prostate unless he was completely unqualified. Another member here lives and was treated in SC and has had severe continence issues, same doctor? Hook up with David (Purgatory) above.

Cryo and HIFU will have similar results after IMRT, I can understand that as well. Both are local and focal treatments. I do not know if one could present an edge ovr the other. I can say the HIFU is only a clinical trial here in the US and not accepted generally as yet. I expect it will be, but it raises a concern for your already complicated case. This doctor, unless he practices in other countries, has minimal experience, and I would think you need the best at this time.

I knew another person that had a partial prostatectomy, he is many years passed the experience and retired and enjoying the use of an implant. However to submit a 7 gram prostate for dissectional pathology results and not tell you, is an extreme cross of the ethics line. In addition to the malpractice case, you may wish to contact the SC medical board for a license review for the good doctor.

That was all my take...

As a co-moderator of this great forum, I do welcome you and wished you had come sooner.

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 (January 13, 2009): <0.1
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/19/2009 3:13 PM (GMT -6)   
Scott,
I was both shocked and angry when I read your story. How on earth can these doctors who are not proficient in using the robot for surgery be let loose on the public and why did whoever handled the pathology of the prostate specimen not sound the alarm bells. The normal gland in a healthy young man is a regular shape with a base and apex and weighting about 20 gms. As we age the gland increases in size and 30-40 gms is the norm without causing any urinary problems. Pathology receives 7 grams of tissue which must have obviously been incomplete and they make no comment??? Had they commented and your doctor (I use that term loosely in this case) been honest and straightforward with you, then your follow up treatment would in all probability been different. I am extremely pleased to read that your latest doc is convinced the biopsy and PCA3 results indicate only benign tissue remaining. Take care and stay with us.......yours is a valuable story and a lesson for us all.
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)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 1/19/2009 3:39 PM (GMT -6)   
Scot, what part of SC are you in? I am Easley, 10 miles west of Greenville.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, 40 - 90%, G 4+3 & 3+4
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, Catheter out on 12/15/8. Stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08. Emergency room put in Catheter # day 45, 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/13/9 - removed blockage, put in Cath #5, 1/19/9 -out
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grams, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/19/2009 4:10 PM (GMT -6)   
Thanks for all of the interest and supportive comments, I am going to try to address them all if I miss any please let me know.

I am in the Florence area and was operated on at Carolina's hopspital system, Florence.

My Dr. had previously been performing the open anatomical procedure and I know going in that my robotic was his eighth but he told me that he was being proctored by a Scott Burgess of Tulane and after checking into Dr. Burgess' credentials I decided I was in good hands, afterall here is a reasonable young Dr. making a mark with recent technology and the old had would be at his side. I have reason to believe in reviewing the surgical records that Dr. Burgess did not participate either in person or even for that matter via some sort of comlink.

Concerning the small specimen, had that been disclosed to me by the surgeon at the time he had recieved the path report I would have been doing major research at that time and I think he knew it. He purposely led me to believe that the only possible reason for my persistant PSA was that the cancer had escaped the confines of my prostate.

The Dr. who did the sat biopsy had his primary medical training in Holland, hence the interest in HIFU and then came to the US served in the Airforce and is now in private practice in Florida. If I need to go forward with HIFU I think he is my choice and we would do the procedure in Cancun. Even though he does specialize in HIFU he does not recommend addressing the remaining tissue unless at some point in the future biopsy proves any of it to be cancerous.

I also have to agree with the member who commented on the competence of the surgeon with the robot. I wonder how uniform the training and certification of this process is. I have been told that Dr. Walsh was once asked if he was diagnosed with an operable prostate cancer what procedure would he choose and that he replied he would choose radiation as he would be unable to operate on himself.

I also want to thank everyone for the promt and warm response. I did find a site, I think it was cancerboards and the mods were arbitrary and the site was not well managed. I am an administrater on an eb site which deals with canine endocrinolgical issues, it is a warm caring community and this one feels a lot like it. It will take a few days but I want to learn more about you all and I hope I can help you to help others.


Thanks. Scott
Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/19/2009 4:45 PM (GMT -6)   
I have been harping on this forum about docs believing they are demi-Gods. You got terrible treatment and lousy advice it appears. FYi(for the others herein yourself you probably know about)- radiation results for psa numbers is way different than surgery and other methods, it take many months or over a year to fully get the total kill effects from radiation by itself. Nadir psa levels (lowest you might reach) with radiations can take 12-18 months or even longer. Mine was 6 months to see it, after that it rose slightly. (this is without hormone drugs being along with it)

Since part of the prostate was not even removed, if true and along with the other scenarios you have growns for malpractice and a possible winnable case. Their used to be a website called accesswatch, try google or other, anyway special lawyers have won PCa cases for their clients. I would seriously consider this if I were you. It seems there are a fair number of riduculous situations like this and they can win some of these cases, especially with sympathic jurors who also would love to see the innocents like us get their day. You deserve more than money could buy, but your further treatments need money too, make them accountable .

Hope you get alot better medical help that you and others deserve.

You got friends herein.


 

Post Edited (zufus) : 1/19/2009 3:49:55 PM (GMT-7)


Gerbe
Regular Member


Date Joined Sep 2008
Total Posts : 42
   Posted 1/19/2009 5:33 PM (GMT -6)   
Scott,

You indicated 'a good malpractice firm.'. Just make sure there as well, that YOU will come out of it well.
This moment, here and now, is nothing less than the totality of existence.
I can't control my life, but I can influence 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.  2 days hospital.  Lymph fluid drain for 2 weeks.
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 1/19/2009 5:44 PM (GMT -6)   
Scott-
I am absolutely sick to my stomach after reading your thread. I am so sorry to hear everything you have been through. I am at a loss for words. Wow.

I am glad you found us and I hope you will keep us posted.
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 1/19/2009 5:46 PM (GMT -6)   
Scott, I know Florence well, lived in Manning for 6 years and did lots of daily biz there. I had heard mix opinions of your hospital there years ago when I was in the area. In Greenville, there is just one robot, at St. Francis where I had my surgery, the only surgeon qualified is in my dr/surgeons practice, and at the time, early November 2008, the guy had only done about 15. My own surgeon in the same practice said not to do it, as the other guy wasn't experienced enough, and he is his partner! So I went open. If you need anything, let me know.

David in Easley, SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, 40 - 90%, G 4+3 & 3+4
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, Catheter out on 12/15/8. Stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08. Emergency room put in Catheter # day 45, 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/13/9 - removed blockage, put in Cath #5, 1/19/9 -out
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grams, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4083
   Posted 1/19/2009 5:54 PM (GMT -6)   

Dear Scott:

Like some of the others, your story makes me both sick and angry.  I know that no monetary award can pay you back for the misery you have but, nevertheless, I hope you rip him a new one financially!

On a positive note, your experiences may help one or more patients and I'm sure they will.  Sorry you have to be here but welcome.

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/30/08.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/19/2009 6:22 PM (GMT -6)   

Scott,

You mentioned that you hoped to help us ot in the future.  Your post did just that.  Thank you.

I would be pretty upset if my doctors were less than up front with me.  One of the most important trusts we can give is to a doctor performing a surgery.  While your treatment by your doctor was absurd, it takes more than a accidental avoidance of the Hypocratic oath to be the man in charge of your case and withhold this valuable information.  It would take incompetence to not know he sliced a prostate and leave the remaining tissue behind.  It would take a criminal mind to do it and cover it up.  That stated it would take a lawyer to make more financially of it than you receive.  I agree with Gerbe on this one.  Make sure the malpractice guys get paid by the doctor.  And if criminal minds are shown, this is worth a visit to the DA as well. 

I'd like to know how patients 1 through 7 are doing.

Tony


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 1/19/2009 6:25 PM (GMT -6)   
That's a frightening thought Tony, about 1 - 7. Geez.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, 40 - 90%, G 4+3 & 3+4
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, Catheter out on 12/15/8. Stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08. Emergency room put in Catheter # day 45, 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/13/9 - removed blockage, put in Cath #5, 1/19/9 -out
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grams, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 1/19/2009 7:54 PM (GMT -6)   
Most of us reading your post are reminded of the tough decision process each person goes through when first informed of their PC. I know that I also got some run-a-round and misleading information - some doctors can be heartless, petty, and shameful. Had it not been for a man I work with who had been down the same PC road ahead of me, and another friend who had also had experience there is no telling of my outcomes. Your story brings to mind the often talked about issue big issue with any treatment - experience, experience, experience. I would add one more ingredient - TRUST. I have never understood who those first cases to be operated on came about, but as there are no guarantees with any of this the best any of us can do is look for the most historically reliable doctors, with prestine reputations.

I hope this new doc can help you sort out the issues that remain, and that ultimately you will have a happy outcome!

RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.1 10/30/2008


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/20/2009 9:02 AM (GMT -6)   
The Dr. is Peter OKelly in Florence, SC.
chas036 said...
Scott,,can you tell us the name and location of the surgeon who performed you RP so no one else has to go through what you have been through. 



Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 1/20/2009 11:04 AM (GMT -6)   
Scott,

What a nightmare you have had to endure. There is no excuse for what has happened to you. Thank you for reminding me to not blindingly accept everything I am told by Doctors and to not hold back in asking the the tough questions. I wish you the best of luck in getting all of your health back. And definately good luck in your legal quest.
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 due 2-17-09


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/20/2009 12:49 PM (GMT -6)   
Oh Scott, What a nightmare for you.....But your experiences will really be helpful to the posters here. It reminds us to be especially careful choosing a doctor.... The problem is when we go to a doctor.....we WANT to believe what they say, and sort of blindside ourselves by totally believing. The word Cancer is initially so scary, that even though we think we will be cautious with treatments, we really really want them to work, and so try not to be doubtful with the doctor or the treatments... I will have to say that things are rapidly changing with differing options and some doctors may not be as up to date as some of you here on this site. I have learned so very much here, and hopefully Pete will benefit. Di
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/20/2009 12:58 PM (GMT -6)   

The really scary part is that I had made myself informed before going ahead with the procedure and I still allowed this to happen.  The robot was new for the hospital, it was the first on in the state and the hospital had made a big deal about it publically with billboards and the local paper ran an extensive report on one of the first patients and the successful outcome.  So I reasoned I was OK, where I really messed up was in not asking for copies of pathology and the surgical notes right away but I think I was in a sort of daze the day the Dr. informed me of the first post surg PSA and his immediate referral to the radiation oncologist and once I started down that path it never occured to me to question the diagnosis.

It is so true that there is only one shot at getting this surgery right.

Scott

 


Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4188
   Posted 1/20/2009 1:03 PM (GMT -6)   
Scott,
Sorry to hear about your misfortune; it shouldn't happen to anyone. If your prostate is clear of cancer what about your lymph nodes, Have you had them checked? Did they take out any lymph nodes in surgery and send them to path? Did you have any radiation to your lymph nodes afterwards?
This could be the source of your rising PSA.
JohnT
Diagnosed 10-08 at 63 with PSA of 33
PSA was 4.4 in 1999 and has risen steadily.
Had 13 biopsies and an endorectal MRI, all negative until 10-08. Two cores out of 25 with a gleason 6
2nd opinion with an oncologist said cancer found was insignificant, but suspected larger tumor somewhere.
Doppler ultrasound with target biopsy indicate a large tumor in the transition zone, gleason 7.
Bone and CT scans negative.
PSA3= 43; (high normal is 35)
Scheduled for Combidex MRI in Feb. (Lymph node imaging MRI done in Holland).
Location of tumor makes positive surgical margin unlikely.
Looking at IMRT with hormone therapy as soon as staging is complete with Combidex MRI.
Changed diet, eliminated all meat and dairy. Taking the normal supplements recommended for PC.
 
JohnT
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/20/2009 3:08 PM (GMT -6)   

Hi JohnT, thanks for the inquiry.

I had no lymph biopsy or removal.  I have had two prostascint scans.  I don't know if you are familiar with this scan, it is not in widespread use.

A typical PET scan uses a radio-tracer to detect increased biological activity which in a person suspected of cancer to be metastisis.  It is non specific, any increased bio activity will light up on a simple PET.

A prostascint uses a unique marker which attaches only to a protein expressed by prostate tissue so the radio-material is not attracted to anything which is not based on the origanal prostate cancer.  The other neat aspect is that the nuc scan is overlayed with a CT which can actually image which tissues have been infiltrated by the 'wandering' PC.

My scans are negative for distant cancer which is why I was so insistant on pursuing this past the various prognosises I was given.

Right now it seems I have made the right desicion, I pray it remains that way.

Scott

 


Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney

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