Back from Uro/Surgeon's Office - Never An Easy Answer

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/15/2010 2:25 PM (GMT -6)   
Just got back from my 2 week checkup with my uro/surgeon after my last corrective surgery.  He told me to stop the daily 'tests" blocking off the catheter for at least a full week, to give it a chance to heal some more.  Then next Monday, try a single test ,if it still causes so much pain, cease  testing.  I also scheduled my 2nd post Radiation PSA test with him on April 6th.
 
We spent a full 30 minutes together.  He never rushes me.  Gave him a full typed page update that he read before we even spoke.
He still strongly feels that all the stricture issues now have been made worse from the salvage radiation.  Even though it ended over 3 months ago, he said it can take 9 months, a year, or sometimes even more to heal, and sometimes it never does.  The radiation has just complicated an already complicated situation.
 
In two weeks, under heavy sedation again, he said he needs to look with the scope, he said during the last surgery, he opened me a lot, and he needs to know what reduction has taken place during this time.  He promised to abort instantly if I am too sore when I see him, and/or if the pain level is too high if he attempts.
 
We talked about beyond this point, and there is no easy answer.  He is in contact with Chief of Urology, Dr. George Webster, Duke University  (hope that is a big enough brand name for some), he specializes in advanced stricture operatons, including the very complex urethra/bladder neck re-building ops.  They are risky and probmatic even on a good day.  My own surgeon said  that he did not have the skill set or experience to attempt one  (how's that for honesty).  He said I would have to meet strict criteria for the op, and due to radiation damage to the surrounding areas, very well might be disqualified as being too risky.
 
If that couldn't be done, then instead of a perm catheter, even the SP I have now, they could do another op, less risky ,but in the end, they reconstruct something out of a piece of my colon or intenstine, and it exits the body and urinate into a disposable bag, much like a colestomy but for urine instead of feces.  Nice prospect.  But even  then, he said that the radiation damage extends even to the digestive systems, and they might not be able to do that safely either.
 
(Bottom line:  it's just like my uro/surgeon said from the earliest days, surgeries after radiation are bad news.  We think here at HW in terms of salvage surgery being a bad idea for failed radiation treatment as a primary treatment, what he is saying, is that heavy radiation does perm. damage to the surrounding areas, making any kind of surgery difficult at best - something to think about - new guys)  He still feels that getting 72 gys as a salvage dose in such a narrow/deep area such as I have, was a bit on the strong side as a secondary treatment, that it was bound to be probmatic now.
 
The other option, is to just leave the SP (suprapubic) catheter in long term or perm.  He was visiting with a patient recently that has had one in place for 29 years continuous without any major problems.  They do change  them once a month to keep down infections (UTI).  At 57, I would hate to think even that option, to live with a lifetime cath and deal with spasms all the time.
 
My uro/surgeon said not to give up hope on the current methodology that he has been attempting, he's hoping that when/if the bladder neck area can heal enough and cease swelling so much, that the openings he has made should, in  theory work, or be workable.
 
I left kind of emotionally shaken, this morning's testing left me so sore  it hurt to walk.  Least I will get a break from that.  So, to my pal Subic Squid in particular  (I am so hoping your last fix fixes you).
 
If any of you have any first hand knowledge/experience with this doctor from Duke, would love to hear an opinion.
 
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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days

Post Edited (Purgatory) : 3/15/2010 1:30:57 PM (GMT-6)


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 3/15/2010 3:27 PM (GMT -6)   
David, sorry to hear about your results. My uro also mentioned the bladder neck reconstruction as being a last resort that can be really problematic. I am glad I have postponed radiation treatment. I hope that my PSA will continue to stay low so I can keep postponing the radiation. Went to uro today. He had no qualms about taking out the cath. Said healing should be fine (you've heard that before!!). Wanted to ease the spasm problem. Have a great stream, in fact I am getting concerned about incontinence again. I'll have to be patient and wait until my bladder gets used to being full again and holding it in. I've read about the procedure you mentioned where they make the exit for the urine into a bag instead of a SP catheter. All surgeries suck and have complications, but as a last resort, that almost sounds livable compared to what you have been going thru. Your doc seems really concerned and compassionate. Sounds like mine. For me its off to work tomorrow after two weeks of sitting home being bored. That is, unless I can't pee sometime during the night. I'm glad i have sick leave to cover all the time off work. When that runs out I will be screwed. Anyway, hang in there. Despite what some have said, you and your doc seem to have it together, even tho so far the problem hasn't been fixed. Squid
*Age 63, PSA July 2009 5.66
*Diagnosed July 2009, Biopsy: 2 of 12 cores positive, Gleason 3 + 5 = 8
*MRI and Bone Scan Negative.
*open Surgery October 22, 2009
*Prostate, both nerve bundles, seminal vessels, and lymph nodes removed during surgery.
*Post surgery Biopsy, Gleason 4 + 3; 2 positive margins
*Still slightly incontinant after 3 months - 1 pad per day (light). Dry at night. 1-2 trips to toilet.
*ED - Yes (will start Levitra possibly in January)
*30 day PSA (ultra-sensitive) .07
*90 day PSA (standard) <0.15
*01/10 - bladder neck stricture. opened during cysto exam. Cath #2 in for 5 days.
*IMRT/IGRT delayed until April pending 180 day PSA result
*03/01 - bladder neck stricture. Dilated during cysto exam. Cath #3 in place.
*03/11 - Bladder neck surgery. Cath #4 in place.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 3/15/2010 3:32 PM (GMT -6)   

I hope both of you guys catch a break soon.

David: Is there any way YOU can consult with that Duke guy? Sometimes you can glean something helpful by a one-to-one conference, even if it is a telephone conference. Maybe your doctor can arrange this?

 

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!

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


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/15/2010 3:39 PM (GMT -6)   
David, words do fail me. It sounds to me like your urologist is trying his best to work out a viable solution for you. While I don't have an M.D. after my name (at least legally), I would tend to agree that your salvage radiation was on the aggressive side dosage wise. Do you happen to know if the uro voiced any concern before the radiation began about the dosage the rad onc was considering, especially since the uro knew of your existing bladder issues?

I know that many here might disagree with me but your situation reminds me of what our urologist said from the get-go: radiation (whether as a primary treatment or in a salvage situation) is not a decision to be made lightly (nor is surgery, for that matter). Not much different than chemotherapy in that you just don't know the extent of collateral damage until months or even years later.
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. Thank you God!


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/15/2010 3:40 PM (GMT -6)   
David,

I am glad you and your uro had the conversation. Obviously, all of us only hear what you say. Not sure if he said before that he didn't have skills to do big bladder neck surgery, bit if it were me, I would feel better knowing he will say so when he thinks it is above his pay grade.

None of your options sound great at this point. Hopefully, with enough checking around, you will find an option that suits you the best, much like we do when considering surgery or radiation.

We continue to stand with you, and hope and pray for the best.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/15/2010 3:44 PM (GMT -6)   
Mel, that's a distinct possiblity, though saving that card until such a time as it looks like that might be the answer. The good news, it is an alternative, though a serious one, not without problems or risk.

As mentioned previously, chronic stricture problems are not easily solved, and mine is very complicated by the radiation.

Subic - glad you got your cath out, glad you are starting with a good stream and able to return to work. Hope that fixes you but good.

Still say ,my next post radiation PSA best come back with some glimmer of good news, told my dr. today, I have wished a million times over that I ever consented to the radiation, I knew in my heart from past experience that it was going to cause me big problems. It did during the treatments, and it still being a problem to me months later. If the radiation ultimately fails, I am going to blame no one but myself for inflicting some more poor quality of life issues on myself.

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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 3/15/2010 3:46 PM (GMT -6)   

What is the typical salvage radiation dosage?

 

I think I read somewhere that it is higher than the typical adjuvant dosage

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!

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


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 3/15/2010 3:57 PM (GMT -6)   
 
 
David,
 
What can I say that hasn't been said by others.  You know I am pulling for you to finally find a resolution to your problem.  I do not think the radiation onologists really explained to us all the possible damage that is done by salvage radiation.
 
Jerry
Age 70
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive 12% of sample,
Gleason Score 4+4 =8  Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Post Gleason report  4+4 = 8 Lymph nodes on both sides negative
margins Negative  Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/19/08 dry no more pads
12/2/08 first PSA <0.1
 3/6/09 6 Month PSA 0.0
6/3/09 9 month  PSA 0.1
7/14/09  PSA still 0.1
10/15/09 PSA 0.3
10/26/09 surgery to remove 3 clips in bladder neck  
11/16/09 PSA 0.3
12/14/09 PSA 0.4 
12/28/09 PSA 0.5
Start salvage radiation treatments on January 18th. 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/15/2010 3:59 PM (GMT -6)   
Sephie: your point is well taken, and the advice you were given about radiation is spot on as far as I am concerned. Just because someone endures IMRT or other radiation with relative ease in the delivery of the radiation, doesn't mean it's not causing other problems internally. Yes, my dr. was concerned right from the start when he consulted with my radiation oncologist, he thought the dose was overkill for a secondary treatment. The radiation dr.'s argument was it was needed due to my pre-surgery PSA velocity and post surgery. My uro/surgeon was very concerned what it might do to me in relation to the sticture issue, and so far, its all coming true unfortanately.

goodlife, my uro/surgeon is very skilled and experienced with bladder neck surgery ,the dr. at duke is a specialist at re-building that area when things go wrong, as possibly in this case. Due to my deep/narrow prostate bed, the bladder neck to urethra portion of my open surgery was difficult at best even for a very experienced surgeon like my guy. So not casting blame here. He knows his limits, and he's not afraid to tell me.

mel - don't know, as it varies patient to patient ,case by case, mine was considered a high dose in relation to the limited confines of the space it was delievered. before i consented, i asked my radiation oncologist several times about the planned dose and talked it over with my uro more than once. while radiation is not his field, he was dubious from the start of problems from this.
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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 3/15/2010 4:04 PM (GMT -6)   
David:
The strength and courage you show to muster on and keep going is an inspiration to the readers here at HW. My uncle had radiation burns as well from his bladder cancer surgery - he held his head high and kept on going for another 20 years - with nary a complaint to family - we learned a lot after he passed (at 78 of heart failure) - but he found the inner strength , as you have so aptly demonstrated here, to rise above it all.
Major hugs
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
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: 3-5 pads/1-2 clothes changes/day- finally seeing improvement - March 3, 2010 - week 14 after surgery -
location: Peteborough, Ontario, Canada
Post Surgery-PSA: to be announced - April 8, 2010
............


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/15/2010 4:08 PM (GMT -6)   
Mel, in answer to your question about dosage for salvage RT, we were told by our urologist and the radiation oncologist that dosage would be about 6600 gys.
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. Thank you God!


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 3/15/2010 4:28 PM (GMT -6)   
David: Just reading your post. I just dont have the words to express what I want to at this time. I am sitting in the hospital at this time. Pat had surgery this morning. She is resting well and we hope go to home tomorrow.

Know that I am thinking of you and your situation. I still contend that I pray for healing. Will call you when I get home for us to talk.

Your Cajun Brother
Jeff
AGE:58, 57dx. PSA 5.4
Biopsy: 9/08 Gleason 3+4=7
open RP: 10?08 Nerve sparing. Path Report : GS 3+3=6 Stg pt2c margins clear
Cath for 10 day. Dry day after removal of Cath
PSA @ 3 months <0.1
6 months <0.1
9 months <0.1
12 months <0.1
16 months <0.1

ED Started VED at 3 months, pills followed VCL none did much, tried MUSE at 9 months (YUCK) Hated it. 15 months out injections Caveject (succecc)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/15/2010 5:35 PM (GMT -6)   
jerry, what is said, if you only knew how many direct questions i asked ahead of time, i did meet with 3 radiation oncologist before settling on one, and I know there may be others here in our group that had radiation prior to PC, so I was very dubious about going down the path. Felt I did my due dilligence. When I first started complaining of pain and "burn" early on, if you remember my radiation diary, at first the rad. dr. said there was no way the radiation was causing it, etc. And when I started getting a real burn during treatment where the catheter exited, they said no way. After she consulted with my uro, the radiation folks started changing their story, first admitting to "scattering" which is supposedly less with IMRT, and then later, colateral damage to the surrounding tissue. hope this explains why i had so much apprehension and fear about going into salvage radiation in the first place.

thanks for your continued kindness, wishing you the best brother

bronson, thanks my friend, and good for your uncles, sounds like he was a real fighter, very inspriing to say the least. hugs back.

sephie - doses in the 60 range sound about what i was told originally, so i still feel that 72 was a lot. not a doctor, so can't really say it was too much, i don't know how exact a science the planning part is, but was under the impression that it was complex

jeff, my dear crawfish abstaining cajun friend, hope pat will be fine. would love to talk again soon, thanks as always
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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/15/2010 8:08 PM (GMT -6)   
Even though it won't solve any of the problem, looking forward to not "testing" off line from the catheter per dr's orders for the next week, still very sore from this mornings attempt.
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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 3/15/2010 8:54 PM (GMT -6)   
David. I would check with your Dr. about Dr. Webster. He is a urologist at Duke but he is not Chief of Urology. The Chief is Dr. Judd Moul. Make sure he is sending you to the best Dr. he can find. Hope you can get all this behind you.

Mika
age at dx 54 now 57
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
ED is getting better
the shots work great, still can't give them to myself
two years of zero's
Retired again after 36 years February 1, 2010


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/15/2010 9:12 PM (GMT -6)   
Thanks Mika, when I googled for Dr. Webster, it came right up that he was Chief of Urology. I know I have the right name, now I need to cross check that info.

David
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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/15/2010 9:16 PM (GMT -6)   
http://www.spoke.com/info/p6bBRBN/GeorgeWebster

P.S. This is the correct doctor, I don't know why the first google search showed him as Chief of Urology. He still seems to be highly regarded in his specialty field.
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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 3/15/2010 11:12 PM (GMT -6)   
Hi David,

We all wanted to hear better news for you. I guess a consolation today is that there are still multiple options left open to help resolve the issues and you're not facing a dead end at this point.

Wishing you good health and comfort, my friend.

Kind regards,

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/07 <0.04; 12/07 <0.04; 03/08 <0.04;
06/08 <0.04; 12/08 <0.04; 06/09 =0.06; 09/09 <0.04;
Latest PSA 12/09 =0.05


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 3/15/2010 11:15 PM (GMT -6)   
David, I wish I could add some wisdom, or useful words, but all I can say is I'm hurting for you and praying this last go-round is better after a week's rest.

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"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02  
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
Feel free to email me at:  sheldonprostate@yahoo.com    


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/16/2010 8:11 AM (GMT -6)   
Big thanks for Barry and Sheldon
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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 3/16/2010 8:56 AM (GMT -6)   
David,
Not sure what to say either but will continue to keep you in my thoughts. You are long overdue for good news, and hope that it arrives soon.
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
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/16/2010 10:17 AM (GMT -6)   
Michael, thanks.

What depressed me the most yesterday when I left, was that, I still feel like I am a never ending pathway here. While there is talk of hope and possibilities, at this point, I can't honestly say I can see the light at the end of t he tunnel.

I did appreciate the lengthy quality time with my doctor, and the fact that he is thinking way outside the norm now, and has begun the process of bringing in a "big gun" to help. He still hopes at some point, if I could ever "heal" from t he radiation side, that I may be all right down there without going to drastic means.

Would rather stay on this SP cath for months/years more, than to undergo a risky op that could leave me 100% incontinent. Neither prospect is great, do you want to get shot or stabbed kind of question.

Right now, my poor bladder neck needs some healing time, and the radiation damage needs to heal up.

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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/16/2010 3:41 PM (GMT -6)   
Was lucky, got a full days work in today consulting, helps keeps my mind thrilled instead of bored. Was so glad not to be testing my urinary system today ,though still sore from yesterday's attempt.
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
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


skeener
Regular Member


Date Joined Dec 2009
Total Posts : 214
   Posted 3/16/2010 4:45 PM (GMT -6)   

David

So nice to read you had a good day!! 

Hope you get lots of work in the future!

Skeener


Age:  63 
Biopsy: May 09 showed 2 of 12 cores positive for prostate cancer -- 1 at 5% and 1 at 25%.  Cancer indicated as non aggressive.  Gleason Score: 3+3.
RRP on Oct 23/09 in London, Ontario.  Excellent surgeon. 
7 Weeks Post Op -  The fears I had about bad things about the operation and recovery did not materialise except of course ED!!.  Otherwise, everything went very smoothly.  Incontinence not a problem.  Wear a pad when out just in case. Pain was never a problem.
Pathology:  Unremarkable 
First followup PSA and Visit: Feb 11/10 - 0.0.
 
Next PSA May
Next doctor's visit in 6 months      


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 3/16/2010 6:58 PM (GMT -6)   
David,
I don't know what to say other than pray for full recovery without any additional procedures.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks 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
11.5 months test 1/21/10 result 0.004

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