Back After Being Mangled By Local Urologist

pthree02 · New User Joined: 05 Jan 2008 Posts: 7 Location: Western KY

Hey Everybody,

Good news first. You can survive this and have quality life. I was active here last Fall/Winter when diagnosed and treated but withdrew because of potential legal action that cannot be.

My stats then were: PSA 4.8, G 3+3, T2c, Open RP 12/28/07, Neg lymph - vesicles - margins, Perineural invasion, tumor within a millimeter of capsule wall. As of the VU exam on 07/21 I am PSA undetectable age 52.

My super Dr. Michael Cookson at Vanderbilt Univ. in Nashville did the RP and may have saved my life. I have an almost superstitious fear of saying I am cured. I cannot say enough about the VU Med. Ctr. and the Drs. and staff there. If you are diagnosed and in the mid-south go there! I was fast tracked (3 weeks post local diagnosis) and it may have been the thing that I owe so much to.

I chose RP over robotic because Dr. C. who trained and worked at Sloane-Kettering had vast experience in manual RP with less at robotic.

After my choice, we had a good discussion and he told me there was a tactile element in the difference between the way cancerous tissue peels out as opposed to normal tissue. I wanted the surgeon taking me apart to be able to feel what he was doing and use his natural senses and so far that has worked out.

My tragedy occurred on a sunny day in January at my small town Kentucky Uro's office when I went in to have the cursed catheter removed. Dr. wasn't in so the nurse removed the catheter. Tragically for me, he pulled once briefly with a syringe to deflate the bulb and then ripped a partially inflated catheter bulb out through a fresh anastomosis, rupturing the great splice Dr. C. had put in place.

Then he palmed it so I wouldn't see and sent me home with no check of continence, ability to urinate or anything at all. Boom! Cya! Hindsight shows he knew what he did afterwards.

Just dribbles that night as I urinated into my abdomen to growing pain. Next day back to the Uro who stated it was tricky to re-insert a catheter into a fresh splice without a cystoscope, proceeded to do just that and sent me to the hospital for a scan and then back home again.

That night, new cath bag filled sporadically with bloody fluid and pain became incredible. In the morning I was telling my god-sent wife to get the car ready to lay me down in the back seat as we were going to VU, a two hour drive, when the phone rang. Scan showed the catheter had blown out through the hole in my anastomosis and was actually draining blood/urine from my abdomen while blocking off my bladder. The damn thing had been inflated in my abdominal cavity!

Now to surgery at the county hospital to pull the current cath and properly insert the new one. I think the anesthesia was for him and not me. Then three days on IV antibiotics and a Dr. who would not tell me what he saw when in there. "It is UGLY! What do you expect after surgery!" he snapped at me.

Dr. C. at VU repaired me with two more procedures, and incredibly, after ten more weeks on that infernal catheter, my bladder was overfilled and the cath taken out to the amazing result that I did not and have not to this day dribbled a single drop except on demand! And I lift large weights everyday at work as a matter of course. That my friends is a surgeon.

Three months on a catheter is hell on earth and I was going to sue that local moron so I dropped out of here to avoid being googled. The sad truth is that there isn't a lawyer in Kentucky who will take the suit! Seems if you are not permanently disabled or dead you are not worth the law firm's investment. I was told they lose 9 out of 10 malpractices and have to count on winning big when they do to make up for it.

Since that period after surgery and cath removal is the most critical to getting it up again later - sort of lets enhance it and use it or lose it - I've likely lost it. VU actually gives you a masturbation workout schedule with the ED prescriptions, but I was cathed for too long. Lawyers say though that the opposition could claim I might have ended up this way anyhow.

But I am alive and with a beautiful woman who continually reassures me that penetration is vastly over-rated and is always anxious to explore new things for both of us. I retain the capacity for orgasm.

Beware your local doctors. Mine was an excellent diagnostician who found the cancer, but totally incompetent when stressed in the moment and put way too much responsibility on his staff.

ALWAYS, and as soon as possible, when you suspect you are dealing with cancer, get yourself to a known Center Of Excellence for treatment! There may be a list that somebody on here, likely Replicant or BrainMan can link you to, but do it!

And BTW, my best to BrainMan and the Replicant, very glad to see you here and know you are doing well. When I was first diagnosed and very scared your support was so very very helpful!

Apologizing for length of post,

Paul P.

Hawk · Experienced user Joined: 22 Nov 2006 Posts: 56

Pthree,

Pthree, I just want to tell you that was one hair-raising story. It was difficult to read. I noticed I was pressing my hands into my groin as I read it. I am sorry you had to endure such.

I had surgery a Memorial Sloan-Kettering (MSKCC) which is almost 4 hours from me. My local urology firm of the only 5 urologists in the county would not touch me because they were mad I didn't get the surgery from them. Fortunately I have a GREAT family doctor who called my MSKCC surgeon to confirm clearance to decath me. He did it in an instant and it saved me 8hrs of driving.

You are very fortunate to have a wife that supports you and to have the kind of relationship that that can find new intimacy. I can actually say that our relationship grew as we experimented to see what worked and what didn't. It added an element we had not had to explore for decades.

I wish you luck. You will very possibly still have continued nerve repair for many more months so you might still gain some functioning. There are many things you can do to encourage progress. I know you did not suggest this but my personal opinion is that injections should be your LAST option.

Hawk
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2 - 8.1 - 8.7 Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06 - May .09 - Jun .10 - Aug .10

Replicant · Moderator Joined: 01 Nov 2006 Posts: 244

Good news on the PSA. I'm terribly sorry to hear about your ordeal with the catheter. Like Hawk, I was cringing, but I made myself keep reading.

I wish you continued healing and good luck.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T3a, N0M0, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 <0.1, 12/07 <0.1, 4/08 <0.1, 11/08 <0.1
http://pcabefore50.blogspot.com

Livinit · Regular Joined: 21 Aug 2008 Posts: 19

Amazing! Here's my comment. Due to circumstances beyond everyone's control, I had to remove my own catheter about a week after surgery. It slid out easily after deflation, but I can assure you if there had been much resistance or pain I would have stopped pulling. Maybe the patient should always do this since he is going to be the first to know if there is a problem.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 244

Livinit,

I respectfully disagree. My layperson's view is that a patient could do real damage. The balloon--unless it has malfunctioned--needs to be deflated by someone who knows what they're doing. The timing needs to be right, too. A patient could rip open the sutures in the urethra if they did it before healing was complete and/or if the balloon was still inflated.

I'm not saying that mistakes don't happen in doctor's offices. But you're far more likely to injure yourself than if you have a seasoned professional do the removal.

I had a urological nurse do it. She first flooded my bladder with sterile water (how many people could do that to themselves?), and then when my bladder was full, she deflated the balloon and removed the catheter. I imagine the water was to help push and lubricate the cath as it moved through. It only took a few seconds--didn't feel great but didn't really hurt, either--and I had no problems.

I know that people routinely insert and remove their own urinary catheters when they have a problem that prevents normal urination, but there's no balloon as far as I know, and they're dealing with a urethra that wasn't cut apart and resewn a matter of days before...
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T3a, N0M0, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 <0.1, 12/07 <0.1, 4/08 <0.1, 11/08 <0.1
http://pcabefore50.blogspot.com

brainman

Livinit, I to disagree. Unless you are trained to remove a catheter, you should never try. If you are having problems with your catheter, go to see your doctor for advice and assistance.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Livinit · Regular Joined: 21 Aug 2008 Posts: 19

Having medical procedures done by medical professionals is always the best idea, and I didn't mean to suggest otherwise. My real point was that once a catheter has been properly prepared for removal it might be a good idea to let the patient pull it out since they will be the first one to sense a problem and are less likely to injure themselves. After reading this post and the one by garyfoote, I will never allow anyone but myself to remove a catheter from me as long as I am able to do it myself. I realize some people are too squeamish to do such a thing, but it's not brain surgery, and, as we have seen, medical professionals are not infallible. Having said that, it is always better to have it done in a hospital or doctors office and not at home the way I did it.

Hawk · Experienced user Joined: 22 Nov 2006 Posts: 56

Just a comment for what it is worth.

I had a top tier surgeon at MSKCC that was very quick to tell me I could remove my own catheter and explained the process. He recommended standing in the shower when I did it and said it would almost drop out. Interestingly enough, his nurse strongly cautioned me against it even knowing what her doctor had said.

As it turned out, my local family doctor did it because I still had an abdominal drainage tube that needed to be removed. My doctor called MSKCC to confer before he proceeded to remove the drain and catheter.

He deflated the balloon and the catheter pretty much fell right out.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2 - 8.1 - 8.7 Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06 - May .09 - Jun .10 - Aug .10

brainman

I have know of some cases where the doctor actually trained his patients to remove the catheter in case of an emergency. I see your point Livinit. Thank you for the clarification Smile

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

	Cancer Forums Forum Index -> Prostate Cancer Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others