Need help dealing with surgery results

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

IWasRobbed
New Member


Date Joined May 2009
Total Posts : 7
   Posted 6/2/2009 4:26 PM (GMT -6)   
I am looking for a support/discussion group that deals with prostate issues and hope this is it. My prostate
problem was non-cancerous but the affects of the surgery are similar to a person who has had treatment for prostate cancer.
 
about 18-months ago, I had surgery to relieve a frequent urination problem. The Dr told me that my prostate
was restricting my urethra causinig my bladder to over-work. The excessive force needed essentially caused my bladder to become more sensitive and signal the need to go more often. The surgery involved going up my
urethra and burning the inside of my prostate with a laser. The removal of the inside portion of the prostate
was to reduce the restriction and make urination easier. Sounds simple enough, however, if the doctor had bothered to inform me of ALL of the effects of this surgery, I would certainly have elected to forgo the surgery
and live with the frequency problem.
 
As a result of removing a portion of the inner prostate, sex has changed - I no longer ejaculate. At orgasim, my semen goes into my bladder (retrograde ejaculation). This has had a significant affect my mental health. I have been in therapy for more than one year now.
 
To make things worse, the Doctor denies that he neglected to inform me of this side affect. So along with coping with the physical changes, I have to cope with the anger and frustration of dealing with the Doctor and the hospital where the surgery was performed. I have been to every lawyer within a 50-mile radious of my home and everyone has told me that a malpractice suit would be difficult to win; in addition to the federal liability limitations, the state of Wisconsin makes it even harder to prove medical malpractice. To add insult to injury, the surgery did not correct the urination frequency.
 
The mere act of writing this has caused my hands to start shaking. I cannot get past feeling angry at the doctor, wanting revenge (a lawsuit) and "mourning the death" of a normal sex life. Sex with my spouse has become a reminder of what happened to me more than an intimate act for us to share. The physical and mental issues have also caused intermittent ED problems. I went in to the doctor with a problem that was inconvenient, but still manageable and came ot with a multitude of issues including the original problem. My spouse is understanding but has difficulty expressing her feelings (and I am not very good at it eithor). I am only 52.
 
This isn't the kind of issue that gets talked about over lunch or fising with friends. There are no support gorups in the area to address this kind of issue - my hometown is rather small. Only me and my therapist know :). I need
to hear form someone who has learned to adjust to the changes prostate surgery can cause in life.

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 6/2/2009 4:58 PM (GMT -6)   
Man...what a nightmare for you. For those of us that went through surgery in dealing with cancer, we knew the risks and side effects up front for the most part. The side effects of incontinence and ED are popular subjects here on this forum. Having surgery, we don't have ejaculate, so the the retrograde problems doesn't exist. But I certainly sympathize with you on the ED front...no fun at all. There are some here that had the TURP and can post some advice for you to deal with your current issues, but the main thing is that you will have support here from others.

Dealing with the mental part is very important for many reasons. Stay in touch as you work through those issues. And the foremost thing I would recommend, is begin your search for an new urologist that can correct the problem and not just live with it...even if it means going to a larger city to find them. Living with this for 18 months, doesn't sound right to me.
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 April 2009 .06


DS Can
Regular Member


Date Joined May 2009
Total Posts : 195
   Posted 6/2/2009 6:26 PM (GMT -6)   

IWR,

I'm sorry to hear about your difficulties.  The mental part is often worse than the physical part.

If you are looking for a new urologist and can get to the Madison area, check out Dr. Adam Tierney.  He is with the Dean Health System.  You should find them with a Google search.

Have you looked into a local Man to Man chapter through the American Cancer Society.  You have many of the conditions that this group can support you through.

Best wishes for a turnaround,

DS


PSA 01/07 was 1.2, PSA 01/08 was 1.9, PSA 01/09 was 2.5.
BIOPSY 02/24/09, adenocarcinoma DX at age 52
 Right:GS 3+3=6, tumor 3/6 cores, 10% involvement,PNI-Yes
 Left: GS 3+3=6, tumor 1/7 cores, <5% involvement,PNI-No
LARP 04/09/09,nerve sparing. Final pathology:
 GS 3+4=7, Margins uninvolved, 2 lymph nodes negative.
Catheter removed on 04/17. First no-pad day was 05/03.
ED treatment is 25 mg Viagra nightly.
First followup PSA results on 05/28/09: <0.1,undetectable!
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/2/2009 6:51 PM (GMT -6)   
I am very sorry that you have had such difficulty. It is a sad case and one that does indeed place you in the same boat as many of the guys here. So with that, I welcome you here to HealingWell. Most of the guys who had surgery here were well informed about the ejaculation stuff. I say most but I can site a few cases that did not realize that they would be dry at ejeculation. Still it did not bother me that I would be except that I was unhappy about being sterile. Ruth and I lost a late pregnancy in 1998, and when I was diagnosed we were still trying to right that ship. My diagnosis changed our direction on that, though I regret not banking sperm for a later decision. But it is what it is. More important for you is coping with what you have to move forward. And that is a loving and understanding wife, and no cancer. For many of us here the real challenge is not the treatment, it's the threat of relapse. So most who decided on surgery had already weighed the decision of being dry or incontinent versus living with cancer. I hope this helps. You are welcome to see if the guys can lend you more information. Some of the guys have had some trying cases and a bad go with cancer. I have met guys who self catheterize just to urinate. I mention this just for your information.

Peace to you.

Tony
 Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 6/2/2009 7:29 PM (GMT -6)   
Welcome to the group.

First I think you need to put the past behind you. As you are unlikely to win a lawsuit, put that thought out of your mind. The past is in the past, and you do yourself no good by getting steamed up over what has happened. Forgive and move forward.

It may be your urethra is now wider than it used to be, but that your bladder just needs to be retrained. So things may not be as bad as you think. I agree that you need a new urologist -- one that you trust. He will be best able to assess your current condition and advise on what further treatment (if any) you need. He may be able to suggest some exercises.

Even if you are stuck with retrograde ejaculation, compared to many here, you are well ahead. Most of us here have no ejaculation at all, and some, like me, don't even have natural erections. But for all that, we find sex is still good and often orgasms are longer and more intense than before. Another advantage: no mess!

So, in your case, there is a lot of hope and you can be assured that you will not die from retrograde ejaculation. Sex may be different but it can still be very enjoyable -- you still have a lot to live for. Please do stick around and keep us up-to-date.
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
ED:
After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.


Bluenose
Regular Member


Date Joined May 2008
Total Posts : 260
   Posted 6/2/2009 8:56 PM (GMT -6)   

 

 whew...want a candy-cane....


 
  age: 53 @ Dx, Pre-op PSA Feb 08' 5.0, April 08' 4.1
  Biopsy 5.1.08, 5 of 15 cores postive, T2a, Gleason 3+4=7
  DaVinci performed 7.29.08
  Bladder sling installed, umbilical hernia repaired during surgery.
  Path report, "cancer fully contained, margins clear".
  Cath removed 8.8.08, ED therapy begins 8.9.08
  100mg Viagra three times a week, pump for ten minutes daily
  and hold for ten minutes.
  8.16.08 switched to Levitra 20mg, immediate results
  9.15.08 Pad free at night, one thin (light) pad during the day
  9.18.08 1st Post-op PSA Undetectable Zero's....Yes!
  12.22.08 2nd Post-op PSA  Zero's still...
  Pads gone 1.3.09, finally found the courage...Thanks ya'll
          ".....tryin' to reason with hurricane season...."
       


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 6/3/2009 8:12 AM (GMT -6)   
IWas,

First, let me say just how how sorry I am that the prostate surgery did not correct the problem it was intended to correct. It's something else to work through that wasn't expected. I wish you well.

Second, not to sound insensitive to your concern but, did you say your ability to ejaculate ruined your sex life? Did it deminish the ability to feel passion for the woman you share a bed with or the ability to feel the sensation of climax? If not, then relax and enjoy. It's just fluid. I would be very hurt if my husband put his fluid above his passion. In fact....I think I have been! It was as though his passion for our time together was less valuable to him than a tablespoon of fluid. As you can guess, that was not a good feeling for either of us! Three is a time for mourning and a time to move forward. By not letting fluid control your emotions, your desire, you can find your way through and get back to enjoying a passionate intimate relationship.

A little levitra, cialis or viagra might be helpful for a while should ED issues be worrying you. Good luck, good health and, I do hope you're feeling the good ole passion again real soon.

Be Well, Swim
 


IWasRobbed
New Member


Date Joined May 2009
Total Posts : 7
   Posted 6/3/2009 12:13 PM (GMT -6)   
Here is a followup on some of the issues brought up.

I (obviously) don't have any PSa numbers, etc to post, but here is my profile

Age: 52
Live in NW Wisconsin
Date of surgery: Nov 2007

The Urination problen still persists, even after 18 months. I don't hold any hope of my bladder retraining it self.

I have seen a second URO after the surgery. He perscribed Elmiron and after that Sanctura.
This was after my original URO tried Flomax and Detrol before recomending surgery.
All any of the drugs did was give me such bad cotton mouth I could barely talk.

I have considered looking for another (3rd) urologist, but my distrust of the profession and not wanting to
risk more failure have been dificult to overcome.

To clear up what I mean by retrograte ejaculation ruining my sex life, it is not the physical lack of results, but the
mental reminder of what an insensitive jerk the first URO was. At my follow up visit after the surgery, I stated
that this "loss" was not expected, his comment was "You not going to have kids at your age anyway".
This is the type of thing that has been difficult to get out of my head.

I have long since given up on any type of lawsuit. What is most annoying is that the system seems to be stacked
against the patient.

Fortunately, the ED problem has turned out to be mostly a state of mind. After a few doses of the blue pill, I was convinced that the mechanics still worked and I just need to not worry about it. The anti-depressants also had an
affect on erections. That seems to have lesseded as my body has adjusted to them.

I have been told that I need to get past feeling like a victim, hence my adventure into this group. Yes, compared to most people in this group, I am fortunate that I do not have (any form) of cancer. However, like a previous post pointed out,
most who have gone through PC and treatment, they were well informed before goint into the procedure.

The feeling of guilt for maybe not asking more questions before my surgery may or may not be legitimate, but it is an issure
for me. Maybe I was too trusting before this happened. I certainly will not take for granted what a doctor tells me now.
Was I negligent or was my URO just an arrogant jerk?

Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 6/3/2009 1:36 PM (GMT -6)   
There are probably other forums you should look to to discuss your problems.  I'm not buying the "its their fault" blame thing, though - you had a responsibility to listen and ask questions and it doesn't seem you did that.  It's a good thing you sought professional psychological advice and I encourage you to keep with it.  Be thankful you didn't have the cancer.  Stay well.

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0

 


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 6/3/2009 1:47 PM (GMT -6)   
"Was I negligent or was my URO just an arrogant jerk?"

IMO, your URO had a duty to advise you of the possible side effects of the surgical procedure. He breached his duty by not telling you. Not something for which you can recover monetary damages due to the limitations of the judicial system and proof issues, but he was negligent nonetheless.

It happens all the time in the medical profession. Doctors are people and they make mistakes. Sometimes people die from the mistakes. It's just how things are.

You were not negligent. How could you have possibly known of the risk if the doctor didn't tell you. You trusted your URO to do his job properly. Don't beat yourself up thinking you could've or should've done something different. It's done. Life goes on. We all play the cards we are dealt to the best of our ability. Don't let this take more of your life than it has.
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


Jeff M
New Member


Date Joined May 2009
Total Posts : 10
   Posted 6/3/2009 3:02 PM (GMT -6)   

I had my radical prostectimy on April 15.   It was only two weeks ago that frequent ER visits, a return to the hospital for complications (hopefully) are finally behind me.  Blood clots in my legs were a result of my surgery, and I'm on blood thinners now.   Tomorrow I see my uriologist that specializes in ED.   I had nerve sparing surgery, but right now it is impossible for me to get any kind erection.  Even though I can still have an orgasism, there is a feeling of loss and frustration that they "are dry."

I can cope with all this though.   The tumor on my prostate was on the outside as well as encapsolated.   I take my PSA again in late June.    Now that I'm feeling better, that is what I'm most concerned about.

In fairness to your problem, everything is relative.  I'm 55, and I thought that was young to be diagnosed with this.  I see the ages of most the guys are between 45 and 65.

 

 


jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 6/3/2009 6:23 PM (GMT -6)   
"Don't let this take more of your life than it has."

Sage advice.
Age 62, Sex Male
PSA - 3-20-08 2.7; 4-17-08 3.1; 9-18-08 3.6; 1-22-09 3.8
DRE negative
Ultrasound/biopsy 2-12-09, 50cc
4 of 12 samples positive 3+3=6, Right mid-medial <5%, Right mid-lateral 10-20%, Right base medial 10%, Right base lateral 10% adenocarcinoma

open RRP completed 5-5-09
Post surgical pathology report:
Gleason 3+3=6
Lobes involved - left and right
Extraprostatic extension - none
Surgical margins - very small area of margin involvement in right lobe
Seminal vesicles - Free of neoplasm
Vascular/Lymphatic invasion - none
J-P drain, staples and catheter removed on 5-13-09
pT2cpN0MX
No incontinence issues, no ED issues.
Back to work (desk job) in 9 days from surgery.
Surgeon: Dr. Gary B. Bokinsky

Remember, don't let the bastages get you down !!!


GoodFriendTim
New Member


Date Joined Jun 2009
Total Posts : 11
   Posted 6/14/2009 7:44 PM (GMT -6)   
Dear I Was Robbed: You certainly were! I feel for you. I do not, in any way, want to negate what you went through and are going through, but maybe what I'm about to say will help some other guy who is considering surgery and is reading this post. I was lucky. I had an excellent (although somewhat impatient) urologist and an excellent surgeon. I was diagnosed on Feb 6, 2009 and once I had the diagnosis, my urologist gave me a long list of alternative procedures to consider. But he also said, "If this were me, with these numbers, I would have a robotic prostatectomy." I knew I had several weeks before I made up my mind, and I hit the internet for hours on end, day after day. I made a point to educate myself. I read as much as I could about open vs/ robotic surgery; steroid thereapy; radiation needles; the whole gamut. Once I had all of this information, I began visiting chat rooms like this one, to discuss with other guys what their experiences were, why they chose what they chose; did they have any regrets about the choice they made; etc. etc. By the time I went back to my urologist with my final decision, he was dumbfounded by how much information I had. My final decision was to go with the robotic surgery and I'm extremely glad I did. Yes, I miss having wet ejaculations and not having to depend on pills for an erection. But I'm also cancer free! I realize your surgery was not for cancer and that your expectations were quite different. Yes, there are doctors who don't give all of the information they should, for whatever reasons. But I've found that the GOOD ones provide you with written lists of your various options. It's up to YOU to do further research. If your urologist or surgeon doesn't provide you with written materials (my surgeon gave me a folder that must have had at LEAST 50 different articles in it, plus what to expect and equally as important, what NOT to expect), then just leave the office and find a urologist or surgeon who does provide you with the materials. But even so, you have to do a lot of learning on your own. It's been two months since my surgery and I STILL am learning a lot of things I hadn't known before. Yes, I feel bad for you and what you went through and in no way am I blaming you for your doctor's screw-ups. I'm just saying, learn Learn, LEARN as much as you can on your own.
I wish you the best!

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4112
   Posted 6/14/2009 9:51 PM (GMT -6)   
Robbed: Much like others have posted, I think you should continue with counseling. I understand you issues and anger. You pdrobably should seek advise of another Uro. Try to find on in a University setting and research based. There my be some corrective measures that can be done. I have a freind that had the laser treatment and it went well for him. Sometimes things don't go as planned. I do wish you well you have a supportive wife and you can get through this anger and try to get you life back to pleasure. Best of luck.
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 ED- 5 mg Cialis daily, pump daily,


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 6/15/2009 5:47 AM (GMT -6)   

Yes you have our sympathy on a changed life, now what do think most of these men on this board have???????  PCa in most cases will leave a man with a changed life forever, so yeah we feel your pain, and most of us live it and have learned to accept the lousy fate of such, living trumps sex life (maybe not by alot-LOL) so be thankful for what your have is always the plus side of life.

Now for non-kudos to the medical folks, yes they are in a hurry to make alot of money (asap) people are rushed into treatments, drugs, therapies etc.  When you go see a uro-doc he is not going to suggest vitamins and health tips as your first option on his opinion(s). Same can be said for most other kinds of docs, they are trained and trained to make money....they are not here to be good deed doers (although the hypocratic oath suggests such....our society shuns altruism, faith, God, and total honesty in exchange for b.s., lies, and fat wallets that are like a drug addiction and never get satisfied).

If we actually had brotherly love in the true meaning of such, frankness, openess, total honesty above $$$$ and agendas would rule the day. Soooooooooooooooooo, my advice to 'all people' whom look at any medical issue of their own or friends etc.:  read all you can, get information prior to your modality (so you could cancel before it is too late), look at anything even controversial material or self cures (you never know if it has your name on it and might work-I am talking about any ailment, not cancer specific), seek better docs and write down or tape the session information, for sure get second opinion(s) from other types of docs or someone outside their referral network, compare from forums or internet groups what happen or how someone did or is doing. Then armed with all this info along with your own faith and/or prayers (or thoughts-whatever you seek beyond your own being), prepare to make your best decision.

Then you know you did all you could as a layperson, which is much easier to handle going forward. Then if life sucks, when thrown lemons make lemonade (lol), other options are: conseling, drugs (lol), budweiser, rubber room therapy(lol), or join the Post Office (go postal but with love as you put cancelation stamping on letters), lastly go to Margaritaville and see Jimmy Buffet.....and forget a bout it...ya know what I'm sayin!!! smilewinkgrin


 "I wouldn't join a club that would have me as a member" (Groucho Marx)

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, August 18, 2018 11:41 AM (GMT -6)
There are a total of 2,994,089 posts in 328,103 threads.
View Active Threads


Who's Online
This forum has 161258 registered members. Please welcome our newest member, Mavis.
256 Guest(s), 4 Registered Member(s) are currently online.  Details
Dawnb14, slapshot, PA_grandma, F8