Latest meeting with my Uro/Surgeon

New Topic Post Reply Printable Version
43 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/19/2010 3:05 PM (GMT -6)   
Aside from replacing the blocked catheter this morning, this is a summary of what we discussed as possible options:
 

My uro/surgeon and I had a good talk about where I stand, and what are my real options.  Based on this latest surgery, he said that he still sees extensive radiation damage in the bladder neck and lower end of my bladder in particular.  More evidence to me that the radiation center may have been very wrong about protecting these areas while radiating me with a catheter.  But that’s an entirely different issue. He also said that in the 3 months since he had last operated on me opening up the bladder neck, that it had already scar over aprrox 50% in that short a period of time.

The doc now feels that since I am coming up on the 9 month mark post SRT, that a “natural” healing probably isn’t going to take place.  While not wanting to rush into anything, he is deeply concerned about my quality of life issues at this point in time.  The choices for action seem to follow along these lines of thinking:

First, I could stay long term, even forever on SP catheters.  There are patients that have them for 15-20 years, primarily people with severe neuro damage.  But that would mean monthly painful cath changes for life, constant risks of UTI, and though rare, possibility of developing bladder cancer.  Plus it will still leave me with never ending bladder spasms and the general nuisance of constant catheter care.

Second, we talked again about a first rate reconstructive urinary surgeon from Duke University.  Dr. George Weber.  It would involve a lengthy and complex surgery, where my existing bladder neck and urethra connections would be taken apart, and then reconstructed.  But, the feed back so far, is that with so much radiation damage to those areas, the surgery would be even more risky than normal, and involve up to 10 days in the hospital, a long recovery time, and a high risk of total and perm incontinence, even if the rest of it worked.  His general opinion is that any kind of surgery on radiation damage areas is problematic to start with.  If it weren’t for the radiation damage, it might be worth investigating further, but that is not the case.  The expenses beyond our insurance for having  an out of state surgery, and all that it would entail, would be out of sight, even if this made sense.

Third, I could have a urinary diversion surgery known as an ileal conduit surgery.  They have been done and perfected for years, and considered the “gold standard” of urinary diversion surgeries.  It would take about 3-4 hours of surgery locally, and about 4-5 days in the hospital.  It would eliminate any need for catheters forever, low risk of UTIs, no bladder spasms, as the bladder is being bypassed entirely.  It is still another form of open surgery, so there would be some longer recovery time.  But if done correctly, it would bypass any of the damaged areas for good, and once recovered, I would be able to return to a completely normal life and be able to do anything physical I wanted, i.e. bike riding, swimming, mowing, etc.

For a long term fix, it sounds encouraging, even though I would have to go through another major surgery  (though no way as complex as my open Prostate Surgery).  Another plus is I would never have to worry about any type of incontinence, ever, and it would eliminate any possibility of future blockages and strictures.

We are going to consult with my wife in 4 weeks, to see what direction we want to go next as I continue to heal from this latest surgery.  It will give me a chance to gather other opinions and more time to research what may lie ahead.

 David in SC

 


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: Aug 3
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 7/19/2010 3:38 PM (GMT -6)   
David,
Sounds like you have some good options and difficult choices. Glad that you are taking your time on this as this will give you a chance to make a more informed choice. Last night I was reading Lance Armstrongs book about his cancer and it was interesting to see how he changed plans right after the first week of chemo and had three Dr.'s working from different states working as a team on how to approach his testicular cancer. It's worth a read. Anyway hope you got some rest and look forward to hearing of your choice of tx.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 7/19/2010 4:22 PM (GMT -6)   
David - as with all the variable we face in life - there is always hope - wishing you all the best for whatever method you choose -
hopeful hugs
BRONSON
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night - May 25 - 1 pad during day - 1 pad at night for security (barely needed at all) - stress incontinence at work - lifting trees and shrubs...
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
Next PSA - October 8, 2010 - TBA -
............


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 7/19/2010 4:24 PM (GMT -6)   
David, glad that you had this meeting with your uro to discuss options. Also glad that you will have the next 4 weeks to mull things over, do your DD, and discuss with Peg.

Just curious about whether or not you and/or your doctor plan on going back to the radiation doctor to discuss the damage that was done. I think that the RO needs to know exactly what has happened to you as the likely result of your treatment in their facility. Your call, my friend. I know that doctors rarely bad mouth each other but has your uro showed any signs of disappointment or anger over your treatment?

Anyway, right now the important thing is to heal and then make a plan to deal with the stricture once for all. Option #3 sounds hopeful.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/19/2010 5:24 PM (GMT -6)   
thanks, bronson, you are always a pal

sephie,

my uro has been angry from the start with the radiation clinic. he said its typical in his practice, that after the radiation folks fry a person but good, their job is done, and he has to be the one to help pick up the pieces with the patients. he did intervene for me several times while going through the radiation. if i initated something with the rad clinic, he would definitely supply medical data to back up the damage. not sure what it would or wouldnt prove to push the point to them. sure they will go into denial, and sure i signed papers in the past to protect their back sides, and they might just claim that no one can know in advance how a particular patient will react to the poisoning, scattering, and damage from radiation in general.

i did hand deliver a two page letter to my radiation oncologists about a month ago, outlining some of the horrific things I have endured since the radiation ended, but as of now, haven't heard a word. my doctor wouldn't hesitate to call a spade a spade (no racism intended) if push came to shove.
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: Aug 3
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/19/2010 6:48 PM (GMT -6)   
David, was reading up on that procedure. No where did I find the answer to a couple questions that popped up. First, doesn't this placing the urine in the bowel have a potential for permanent diarrea(sp) or at least anal leakage? I can't imagine that any amount of liquid in the bowel wouldn't cause some sort of to much liquid problems. But then I can't find any info on that aspect...lol Maybe the amounts are of such a proportion that this isn't a problem. While that sounds like a miracle cure for your problems, I can't help but wonder if maybe it might be trading one kind of incontience for another? Although with the pain and all you have experienced, a little leakage might be welcome to get off the pain train. Or maybe the water in the urine is readsorbed by the bowel, like stool is now.smilewinkgrin
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 7/19/2010 7:02 PM (GMT -6)   
David,
I'm glad you had a serious discussion with your uro. He seems to really care. Your third option looks good but I'm afraid it sounds too good. Where does the urine accumulate and how is it emptied?
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
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


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 7/19/2010 7:10 PM (GMT -6)   
James C -- here is the possible answer to your questions - "...An ileal conduit is a small urine reservoir [conduit]that is surgically created from a small segment of bowel...."

" ... see description below - complete with pictures !!
www.surgeryencyclopedia.com/Fi-La/Ileal-Conduit-Surgery.html

David - looks like a safety net while you heal -
hugs
BRONSON
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night - May 25 - 1 pad during day - 1 pad at night for security (barely needed at all) - stress incontinence at work - lifting trees and shrubs...
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
Next PSA - October 8, 2010 - TBA -
............

Post Edited (tatt2man) : 7/19/2010 7:50:41 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/19/2010 7:32 PM (GMT -6)   
Actually, a piece of the bowel is used as a tunnel to funnel away the urine to a collection bag outside of a stoma. The urine is not collected anywhere in the body per say. This is no mixing of #1 and #2 at any point.
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: Aug 3
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19


vam4710
Regular Member


Date Joined May 2010
Total Posts : 89
   Posted 7/20/2010 5:58 AM (GMT -6)   
Dave,

My thoughts and prayers are with you with whatever decision you make.... I for one could not even imagine what I would do in your situation. When all is said and done, I hope you can return to some form of a normal life. Your doctor seems to be heading in the right direction in whats best for you..... If I were in your shoes, I would probably take door #3, which would seem to have the better outcome. My best for you my friend, in whatever you decide.
Diagnosis June 1, 2010 @ age 50
PSA  1.7    Sept. 2008
PSA  2.14  Sept. 2009
PSA  2.75  April  2010
 
May  25, 2010  - Biopsy  1 of 12 cores positive;  Gleason 3+4 = 7  25%;   Stage T1c
June 04, 2010  - CT and Bone scan - All Negative
July  07, 2010  - Da Vinci Robotic Lap. Surgery
 
PATHOLOGY
Tumor involvement - 15% both right and left halves
Gleason 3+3=6
Seminal Vesicles - Negative
Lymphnode - Negative
Subcapsular perineural Invasion - Present
Bladder Neck Margin Positive (right posterior) - 1mm Focus
pT3a-N0-MX
 
Incontinence - Dry at night, 2 or 3 pads during the day (looks like the Kegels before surgery paid off)
 
ED  - Total flat tire.... no spare, not even a donut
 
First PSA scheduled for 10/14
 
 
Northern NJ


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 7/20/2010 6:12 AM (GMT -6)   
Cheers and screams from the audience -> GO FOR DOOR #3
 
Keep up the good work storm trouper. The third option sure seems to be like a light at the end of the tunnel.

Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 7/20/2010 7:26 AM (GMT -6)   
David:
 
Would this new surgery be done locally or at a place like Duke?
 
You certainly sound like a perfect candidate for this type of surgery.
 
Obviously, it won't be easy, but we KNOW your current situation is BAD. If there is a surgical way out, then that's good news.
 
I'm sure you will do due dilligence in investigating this procedure.
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/20/2010 7:30 AM (GMT -6)   
That choice is the least complex solution of all that I have been told about and have read about. It has been used for decades, and they have it down to a science, with fewer complications and risk over time. Also, as my doctor said, it would avoid using any areas that have been effected by the radiation, and by-pass those areas.

Part of my wife's job is nursing in severe damage re-hab patients. She told me last night, that she has a new male patient that had the same op done years ago for different reasons. She s going to talk to him this week, to find out what it was like, the operation, the recovery, learning to live as the results, day to day problems, etc

Of all the diversionary methods, its definitely the least invasive once they get you open. The thought of never needing to take ditropan again, and never having spasms, sounds too good at this point. We shall see.

The hardest part would be agreeing to and gearing up for another major surgery. But then, since Nov 8, have now had 7 operations, so whats one more, especially if it ended this painful merry go round I have been stuck on
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: Aug 3
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/20/2010 7:48 AM (GMT -6)   
David, the reason I asked about the urine in the bowel, in one procedure, aside from the bag and stoma is they route the urine into the bowels, and it is eliminated along with the feces. No stoma, no bags, all contained in the bowel. That , if it doesn't cause further bowel or diarrea problems, would be an even better solution to it, rather than the stoma and bag. Or maybe I reading it wrong and if you do get the urine bypass, you have to get the stoma and bag no matter the healthiness of the bowels ,, without the routing into the bowel at some point.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 7/20/2010 8:01 AM (GMT -6)   
David,
I'm not the least bit knowledgeable about any of this (and hope I don't ever need to be), so can only support you in continuing to research the options, and be comfortable with your choice.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 7/20/2010 8:09 AM (GMT -6)   
David,  All I can say is a stand and support you my brother.  Like others have said option #3 sounds like the best but like so many other things with PCa.  That decision is for you and Peg to make together. 
 
The good thing is Peg has some knowledge in this area.
 
Good luck my brother.
 
Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 7/20/2010 8:28 AM (GMT -6)   
David, first, it is nice to see you being able to deal with options and positive possibilities. Second, I am overwhelmed by the complexity of all this. I know you are a straight up detail man by nature and will be, with your wife, in as good a position as anyone, short of a uro doc, could be dealing with this, but still, it must make you want to run and hide in a tree fort with a beer. I'd be wanting to take my Teddy to the tree fort, but as a tougher guy than myself, you'd likely not opt for the Teddy.

Take care.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/20/2010 9:53 AM (GMT -6)   
Thanks, Bro. Jeff. Will be interesting to see what my wife learns from this patient (and hes long term) about the results of the same type op. She said if hes ok with it, I can come up and visit with him sometime, officially, I am still a Volunteer at the same facility, but have been too ill to do much work recently there.

Thanks Sheldon. I am not tough. I am just trying to survive a tough situation with the least amount of trauma and pain. Which is kind of hard to do under the circumstances.

No teddy bears for me, I am a Sock Monkey guy, got one on the bed and one that hangs on my rear view mirror. Everyone loves a sock monkey. I was denied one as a kid, so now I have them, lol.
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: Aug 3
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 7/20/2010 10:00 AM (GMT -6)   
 
Hi David,
 
Sorry to hear about the latest pain and discomfort.
 
Option 3 sounds like it could bring you relief and be workable.
 
An associate who has (now metastatic) bladder cancer, had most of his bladder and his prostate removed as his first line of treatment along with RT. The surgeons made him a new "bladder" from part of his small intestine. He leaks a little bit at night and pees normally. I don't know much else about his procedure but it may be similar, in part, to what you're looking at.
 
Good luck with whatever you choose and I'm sure you will research and weigh the options carefully.
 
Think of you often.
 
Mike
 
PS: A little delivery is scheduled to your house on Thursday yeah
 
 
-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving. ED oral meds didn't do much initially. TRIMIX was working very well. Initial dose of 0.1 mL too much. Had priapism at 0.075 mL that ended up in a humiliating ER visit. Doses recently after 50% dilution by Uro about 0.025 mL or less. Don't use Trimix anymore...I'm too sensitive to it, even at very low doses and the Alprostadil is pretty consistent in causing erection pain...had a few episodes of 3+ hour wood with pain.
-Levitra now starting to work at low doses of 5 mG to 10 mG. Sometimes the side effects like stuffy nose aren't fun...sometimes OK.
-Was supposed to see ED doc last week, but due to his schedule, will now be late August. Will discuss bimix with him.
 


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 7/20/2010 10:30 AM (GMT -6)   

Hey David:

This is still major surgery, so in case you don't make it, can I have your monkey?

 

Mel

 


63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!


Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 7/20/2010 11:16 AM (GMT -6)   
David,

You certainly have been through more than most of us and while I am not about to claim that my journey has been anything like yours, reading your entry today there is a comment or two I'd like to make.

The healing process from my salvage prostatectomy was hampered by the radiation damage to the tissue from the seed implant 10 years earlier. My doctors at Sloan-Kettering told me about Hyperbaric Oxygen Therapy. Basically, five days a week, for 8 weeks I spent two hours a day in an oxygen chamber breathing pure oxygen. The purpose was to promote healing and blood flow through capillaries into damaged tissue. After 20 sessions, my doctors noticed improvement in the tissues. In fact, the rectal fistula had decreased in size by 50%. It improved other things, as well. The thinning spot on the top of my head started showing signs of new growth!!!

I know I mentioned to you once before about the AUS implant and it sounds like that may not be a solution for you. In discussing my incontinence issues with my specialist at The Cleveland Clinic, he told me about a procedure that seemed interesting to me and one that I would have seriously considered had the AUS not been a solution. He said that they build a channel of tissue from your navel into your bladder. Then with sterile "straws" you empty your bladder when you feel the need. He said that you would keep a bandage of some sort over your navel at all times to prevent infection.

I just thought I'd give you something "extra" to think about.

Wigs
Diagnosed @ age 46 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Suprapubic cathether installed - July 2008 @ Cleveland Clinic, OH
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Penile catheter removed October 2008
Suprapubic catheter removed December 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
Urethral stricture removed - January 2009 @ Cleveland Clinic
(Total incontinence - 4 diapers & 6 - 8 pads per 24 hour period)
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
(Wearing a light pad daily.)
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
PSA < .01 - April 2010 
 


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 7/20/2010 12:25 PM (GMT -6)   
David

I think you seem to be heading towards a new chapter. So I'll not avoid speaking plainly.

Am I right that what now seems to be clear is that the damaged parts of your bladder are not healing, or not healing like they should be after this time and that it may be reasonable to conclude that they will never heal?

And is your QOL (and your wife's) re the spasms, pain, discomfort, worry about blockages and the when-will-it-ever-end aspect now such that a complete alternative now seems a more attractive option?

Are you perhaps like a man with a damaged foot that the surgeons have been trying to save for months, who now thinks that amputation might be best as that way you'd get a really practical artificial foot?

And as for the damage done by the original RT I think that the most relevant aspect about expressing your displeasure about what they did will perhaps be to stop them doing it to anyone else.

And one thing is for certain, while you have difficult choices ahead you will sure be well-informed when you make them. And whatever you decide you will find support here.

And who knows, the strangest things happen when you least expect it.

My very best wishes to you and your wife.
Alfred

(I have a one-of-a-kind Teddy bear made for me when I was about 7 by a neighbour that made soft toys. He's not yet had to be taken out of the cupboard, and like me his stuffing leaves something to be desired!)
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak
June 27th My 50th Birthday - feeling better but still not 100% okay


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/20/2010 12:33 PM (GMT -6)   
WIGS, some interesting ideas, an AUS definitely wouldnt assist in my problem. My dr and I did discuss hyperbaric treatments once before, while he believes in them for some issues, he didn't think it would be helpful where I ail. We talked about the "naval" method, but passed on that, as I don't want a lifetime of having to self cath in a sense everytime I need to urinate. Good ideas though. Thanks.

James, still not sure what procedure you saw or read, this is really a simple urinary division surgery. It does not affect the bm side of things, nor does it mix the two together. If you find a name of what you speak about, share it so I can read about it.

Mel, sorry, theres' a long list of people ahead of you locally for my monkey. I do have a large family of Gumby's and Pokeys if interested.

Mike, thanks. There are ops that replace the bladder as you say. With those, sometimes they still exit to the urtethra and sometimes to the surface, requiring self cath for relief. Commonly done for bladder cancer. Much more complex surgery.
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: Aug 3
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19


soxfans4life
Regular Member


Date Joined Apr 2008
Total Posts : 63
   Posted 7/20/2010 1:24 PM (GMT -6)   
redface  Oh David, We are taking a deep breath and sending all our hopes to you! As a visiting nurse, I have seen more than a few people with ileal conduits, cared for them, taught them and discharged them to go back to their lives! Surgery is always what it is ,and learning a new daily proceedure takes time but you have your own visiting nurse tongue and seems like a caring and knowledgable uro! We all need to take time, do our research, and make the decision that seems right for us. We know you will, and will keep thinking of you at this time. (Plus , you still get my absolutely best patient EVER award)  Nurse Annie & Rod

dx. 3-08  @ age 63. gleason 6 . 1 out of 12 cores positive. 4th biopsy in 8 years. previous 3 negative. followed closely due to family hx.grandfather, father and 2 uncles dx. with prostate cancer. dre negative, cat and bone scan negative. davinci scheduled for may 27, 2008. 2 daughters, retired hospital administration, air force family years ago. Davinci on May28,2008, both nerves spared. Catheter removed in 8 days, pathology report revealed precancerous lesions. Presurgical psa was 5.9, 1st  psa scheduled for August. 1st post surgery psa 0.00, august 6,2008. 2 following psa's 0.00.Yearly followup & psa sched for may 2009. Results of this & Jan. 2010 psa 0.00. 


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 7/20/2010 1:25 PM (GMT -6)   
David, nothing really to add to the discussion, but have been following this and wish you all the best in the next phase of your journey.

Wife and I had a talk about your situation last night and it was very enlightening to her as she had no idea that when you sign that little piece of paper saying you understand the complication of the procedures...what that actually means and what can happen. Everyone goes into surgery thinking that they won't be in that small percentage that has complications...but you never can be sure.

Just thinking of you and yours today....
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009     .06
                   6 month Apr 2009     .06
                   9 month Jul  2009     .08
                 12 month Oct 2009     .09 
                 18 month April 2010   .19

New Topic Post Reply Printable Version
43 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Sunday, June 24, 2018 8:43 PM (GMT -6)
There are a total of 2,974,859 posts in 326,216 threads.
View Active Threads


Who's Online
This forum has 161310 registered members. Please welcome our newest member, ejt998.
407 Guest(s), 9 Registered Member(s) are currently online.  Details
McKinley, Kent M., Artist Mark, JNF, The Dude Abides, artvark, ChickenArise, straydog, BOB 46