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SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 1/28/2010 1:17 PM (GMT -6)   
After my cath was removed in November I peed like a seventeen year old.  Good strong stream.  Lately the stream has gotten thinner and thinner until the last few days where I can stand over the toilet and it takes a good minute to drain the bladder (at least it is still draining).  No pain or anything like that.  Made an appointment to see the Urologist this PM.  Guess I am going to get scoped.  I just hope I am not going to have to go thru the whole scar tissue thing.  I know the doctor told me he had one hell of a time sewing me back together during the surgery.  I don't relish the thought of getting a catheter again.  All this and I still haven't made up my mind about getting IMRT (that meeting is next week).  I would think that the radiation would contribute to more scar tissue forming and making the flow problem even worse.  Feeling down, just venting.  Thanks.
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 Surgey October 22, 2009 (6 hours on table; 2 units blood)

Small part of incision infected (2 staples removed); finally healed at 3 month mark.

Prostate, both nerve bundles, seminal vessels, and two lymph nodes removed during surgery.

Post surgery Biopsy, Gleason 4 + 3; 2 positive margins


Returned to work after 6 weeks. First week worked only half days because of pain from sitting for long periods.

Still slightly incontinant after 12 weeks - 1 pads 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


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 1/28/2010 1:20 PM (GMT -6)   
This is the place to vent Subic. Hope that things improve for you as qucikly as possible.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/28/2010 2:09 PM (GMT -6)   
Subic, welcome to my world. You definitely want the uro to fix your stricture or blockage before it closes all the way. Trust me, you don't want to end up in the ER with someone that doesn't know how you are re-plumbed trying to get a catheter into you. Been there done that.

Not to scare you, but because of all my catheter and strictures and stricture corrective surgery, this is why I agreed to have the SP Suprapubic catheter installed pre-emptive before I started salvage radiation. The radiation oncologist and my uro.surgeon knew more than likely that swelling from the radiation would make a bad thing worse.

They were correct, I just had my 4th corrective surgery a week ago Tuesday, my uro/surgeon was amazed that my bladder neck had 100% closed back up, as if it never had an opening. Still recovering from that one, that's why I have two caths in now instead of one.

Good luck, and please have him take care of you before it closes off, wouldnt want you to go through what I have been through in the past 15 months. Let me know, or email or we can talk by phone.

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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 1/28/2010 2:54 PM (GMT -6)   
David, thanks for the advice.  I have been following your trials and what you have gone through has me worried.  That is why I getting into the urologist right away.  My urologist already warned me about the ER.  He told me if I ended up there needing a catheter someday, to insist on an on-call urologist to come and do it - for the reasons you mentioned.  The ER guys could screw up a lot of work.  I'll hope for the best but with my history, luck is not on my side.  A small percentage of people who get prostate biopsies get an infection - I got a severe one requiring IV antibiotics.  about 30% of people getting open RP seem to need followup radiation.  I fall into that category.  about 3% of people getting RP have to get treatmenrt for scar tissue.  Looks like I might be in that group.  Hard to stay positive, but I am trying.

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 Surgey October 22, 2009 (6 hours on table; 2 units blood)

Small part of incision infected (2 staples removed); finally healed at 3 month mark.

Prostate, both nerve bundles, seminal vessels, and two lymph nodes removed during surgery.

Post surgery Biopsy, Gleason 4 + 3; 2 positive margins


Returned to work after 6 weeks. First week worked only half days because of pain from sitting for long periods.

Still slightly incontinant after 12 weeks - 1 pads 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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/28/2010 4:46 PM (GMT -6)   
Subic, you just have to keep doing it one day at a time like me. I would be overwhelmed if I looked at a list of all the complications I have endured since my big surgery in 11/08. Looking back, that was the easy part.

I was in the ER late 12/08, when I had total blockage less than 8 hours after a cath was removed. The ER staff acted liked they never saw a cath before. I insisted that they call my uro staff, this caused much pain and delay, then they didnt do what they were told to do, they used the wrong size and type of catheter, and it took 3 of them to finally get it in. My uro was furious the next day at the ER, he said they could have seriously damaged me. Took me a while to get over the trauma of that event, trust me.

Now my uro makes sure when we do things or try things, that its timed to where he can get back to me during normal times, another reason why I have 2 caths in, instead of one, to prevent another ER or traumatic event. I appreciate his extra concern, because he knows the living hell I have been through so far.

Yes, we are a small group, 2-4% tops, that will have repeat issues with excessive scarring and/or strictures in general. I am still hoping, following my dr's current game plan, that I will finally be able to attempt cath free living in another 5-6 weeks or so. After all I have endured, that is actually a short time. And yes, will be scared as get out even when I reach that point. It will make me nervous until I have peed for a full week on my own.

There are more perm things my surgeon can do if this continues to repeat again and again, but I can't allow myself to think about that at this time.

I can say I understand what you are going through, brother, so if you need some encouragement, I am here.

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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


SubicSquid
Regular Member


Date Joined Oct 2009
Total Posts : 252
   Posted 1/28/2010 7:10 PM (GMT -6)   
My urologist called and got me in this morning. Had my first cystoscope - not as bad as I had imagined. He said the scarring was minor and unblocked it during the procedure. Only bad thing is I have a catheter again until Monday (he promised only until Monday). He did say that I might expect to have this done one more time. I hope not. He did state again about not letting ER people mess with my catheters. Even he said as he was placing it that the first one might not go in right and he might need another size. Fortunately once was the charm. He finished by saying that if my stream started getting weak again to come in immediately, not wait for one week like this time. Good advice I guess. He also said that I should not consider IMRT yet until the scar tissue problem is resolved. I will follow his advice since my PSA is still low. Glad I went in and got this taken care of. I don't want to be an expert on all these terrible procedures like David (who I hope is finally going to see an end to all the problems). Feeling better. I will stay positive somehow.
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 Surgey October 22, 2009 (6 hours on table; 2 units blood)

Small part of incision infected (2 staples removed); finally healed at 3 month mark.

Prostate, both nerve bundles, seminal vessels, and two lymph nodes removed during surgery.

Post surgery Biopsy, Gleason 4 + 3; 2 positive margins


Returned to work after 6 weeks. First week worked only half days because of pain from sitting for long periods.

Still slightly incontinant after 12 weeks - 1 pads 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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/28/2010 8:27 PM (GMT -6)   
Subic, glad you got into your doc, sounds like he knows what he's doing, pretty normal approach at this point. You are lucky he said the cath only has to be in till Monday, usually mine have had to stay in at least 2-3 weeks at a time. Hopefully this will get you flowing smoothly again, and hopefully it will last a good while for you. Listen to what he said about the ER, too much risk of bad damage if you go and someone doesn't know what they are doing.

Keep me posted of how it goes for you.

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
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


pigeonflyer
Regular Member


Date Joined Nov 2009
Total Posts : 85
   Posted 1/28/2010 8:32 PM (GMT -6)   
ya subic, dont wait to long when it starts to plug. iv been there also. dont be scared about the sitution just be on top of the game. the first signs of slowing see the uro. as long as you can p consider it a luckey thing. ive had er docs cather me and they done well after i told them to be careful. good luck. neil
50 years
da vinci on 9/28/09
gleeson 3+3
psa before surgery 5.1 oct/09 psa 0.06
cather out on oct 5, back in on oct 5
two more trys for cather out, still in .
cather out nov. 13/09
cystocope nov.13/09 , cather back in , out again on nov 15/o9, was taught to self cath, still pluged with scar tissue but no cather. have to self cath 6 to 8 times a day. scar tissue removed on jan. 11 2010. no cathing and totally dry. 


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 1/29/2010 10:43 AM (GMT -6)   

Wishing you luck, Subic,  on  getting back to the old 17 year old flow rate.

Good gawd gushing flow is certainly the one nice benefits of surgery.

I am still the envy of the Lavatory after almost a year -- showing up

 those young bucks and the envy of the older BPH guys ...  

Been there (BPH) done with that!   Kind of scarey to think that my plain old  BPH would have required surgery to fully correct also (never started Avodart or any of those -- was too late).

Good luck, good flow!

 

 


Age 58, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- no real effect (thru 01/2010).
04/01/09, 07/07/09, 10/01/09, 01/15/10 PSA <0.1
08/09 MUSE@1000mcg +pump&plump - (80-90%) (alpro ache).
09/09 MUSE@500mcg +pump&plump + 2 advil - (80-90%) - (less Alpro ache).
10/09 TrimixGel@(500/300/100mcg): 1st:60%, 2nd:(pump&plump) 60%, 3rd(added 500mcg muse):70-80% --
12/09 MUSE@500mcg+Cialis@20 working well (>90%) and useful erection.
01/2010 TrimixGel@1000/300/100mcg ordered for one more try:

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