CHRONIC PAIN LONG AFTER PROSTATECTOMY

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Turquoise
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/14/2009 5:18 PM (GMT -7)   
I'm hoping you gentlemen can help my father.  He had a prostatectomy at age 65.  All seemed well until three months after the surgery.  He then developed a chronic pain problem.  He said there was no precipitating incident that would have caused the pain.  He is now 81 and still has the chronic pain.  It's at its worst when he is sitting or standing.  He can only sit or stand for 30 minutes before he needs to go lie down.  Only lying down is comfortable for him.  Obviously, this has severely hindered his activity level. 
 
He was healthy and quite active before surgery.  The cancer was small and doctors say it's all gone. 
 
He has been to urologists, neurologists, pain specialists, and even the Mayo Clinic in Scottsdale.  Lots of tests, but no diagnosis for what's causing the pain, no treatments that have been effective. 
 
It hurts me to see him in chronic pain and so inactive.  He reports no other health problems.
 
All I can find on the internet is information about pain immediately after prostate surgery, not chronic pain long afterwards.  Has anyone else experienced this?  Do y'all have any clues as to what could be causing this, or how it could be solved or at least ameliorated?
 
Any leads would be greatly appreciated.

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 1851
   Posted 11/14/2009 5:52 PM (GMT -7)   
Turquoise,
I have had chronic pain and it almost always  made worse by sitting and driving. Have seen a number of specilaist and will go to a pain clinic next week. They have said neuropathy, or at least the neuroligist did. But the more I sit with this I think it might be a compressed disc and other back problems brought on by the surgey and being on the operating table too long. My MRI will hopefully help them fight the root of the problem.
 
 You didnt say where his pain was originating from and that might provide more clues. But if he is 81 now and was 65 at the time of surgery it is hard to imagine that someone could not find the cause in the course of 16 years. But keep looking and find the right Dr. and hopefully an answer and cure will be found soon.
Michael
Dx with PCA 12/08 2 out of 12 cores positive
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margins not involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only
 started ED tx 7/17, slow go
Great family
Michael


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 584
   Posted 11/14/2009 6:07 PM (GMT -7)   

Where is his pain?  I seriously doubt that prostate cancer has anything to do with his pain.  I have chronic back pain.  I had it before and I have it after.  It has nothing to due with my Pca.

You say that he has been checked out by doctors.  What do they say?

There is also a remote possibility that the pain relates to some cancer spread, but that is unlikely. The doctors should be able to tell you if that is the case.

I live everyday with back pain that has no cure.  I used narcotic pain killers (percocet..etc) and quit them for obvious reasons.  I guess you just need to live with pain if you have it.  I hope you can help him find an answer. 


PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Very Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8 with no extension or invasion
no long term continence problems
Post surgery PSA continues to be "undetectable"
One side nerves spared
Bi-Mix for ED 
born in 1941


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2632
   Posted 11/14/2009 7:30 PM (GMT -7)   
Sometimes surgery causes scar tissue or adhesions to occur. The pain could also be caused by this, but the only way to tell would be to do some exploratory surgery.
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 injections


Turquoise
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/17/2009 9:55 PM (GMT -7)   
I guess I should mention that I am his daughter (not a son), and my father is too reticent to give me very many clinical details (Mom has passed away). I know the pain is in his groin (not back) and the timing related to his prostate surgery seems too coincidental to be unrelated.

Judging from bathroom supplies and dirty laundry, there appears to be at least occasional incontinence issues and bleeding from somewhere in the groin area.

I, too, wondered if it was adhesions/scar tissue. I also read that there are infections (e.g., chlamydia) that are tough to detect in men. The Mayo Clinic visit was about ten years ago, so I'm hoping there have been medical advances since then that could track down the cause of the pain. I'm willing to embarass my Dad a little and ask him some explicit clinical questions in order to hook him up with the right kind of specialist, but what should I ask?

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4137
   Posted 11/18/2009 8:15 AM (GMT -7)   

If my math is correct - he's been this way for 16 YEARS?!?!?!?!? AND there is bleeding involved?

I always say - "When in Doubt - Check it Out" but this seems like your way beyond that.

If it's going to take druging him so you can get him to the hospital - we can maybe help with that....But it sure sounds like he needs to be seen by somebody.

 

 


Age 54   - 5'11"   205lbs
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
Surgeon - Keith A. Waguespack, M.D.


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 1851
   Posted 11/18/2009 8:25 AM (GMT -7)   
I agree with Steve, this should be looked at by a professional as quickly as possible. If you are not happy with his current Dr., look for someone else with a great reputation in that area. This has gone on much too long and no need for him to suffer like that. Update us when you can.
Thanks
Michael
Dx with PCA 12/08 2 out of 12 cores positive
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margins not involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only
 started ED tx 7/17, slow go
Great family
Michael


Turquoise
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/19/2009 9:01 AM (GMT -7)   
My problem is that I live 300 miles away, so I'm not in town to get good word-of-mouth recommendations. I've worked my professional connections, but they can basically mention names from lists of physicians; I might as well pick a name out of the yellow pages.

I'm thinking of taking him to the UCLA Medical Center.

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 1851
   Posted 11/19/2009 11:22 AM (GMT -7)   
As the Nike Ad says, "Just do it." Get help from others as neded but this appears to be long overdue. Good luck and keep us posted if possible.
Michael
Dx with PCA 12/08 2 out of 12 cores positive
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margins not involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only
 started ED tx 7/17, slow go
Great family
Michael


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 584
   Posted 11/19/2009 6:16 PM (GMT -7)   
 
this is a difficult situation for you.  If you lived in the same community as your dad, you might be able to convince him to go to UCLA or some other place.  I think he is admitting that something is very wrong and just needs the push from you or some one else who is close to him.
 
When I was younger, I faced a similar problem with my mother.  Eventually, I just took the time to "force" the situation.  It extended her life by many years.  I'm glad I got 'pushy' and insisted she go to the hospital.  Give it a try.
PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Very Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8 with no extension or invasion
no long term continence problems
Post surgery PSA continues to be "undetectable"
One side nerves spared
Bi-Mix for ED 
born in 1941

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