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Prostatectomy
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matthewsti posted:
I would rather have died from prostate cancer than to live the rest of my life with how I have been left after a prostatectomy. Incontinence, bed-wetting, ED just to mention a few of the problems. I am 51 and divorced and will undoubtedly by single and miserable now for the rest of my life. Thanks alot urologist. Oh, and did I mention the $10,000 in medical bills I am responsible for after the insurance paid some. What a mistake I made in having surgery.
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acailteaux responded:
Matther, wow have you got an attitude. I think you should take a deep breath, relax and look towards the future. I am sure most of your problems will be solved over time so relax and ride the waves. This wave can take you to a beautiful island beach where you can relax, have some exotic drinks and most likely meet a beautiful woman who doesn't really care about your shortcommings. I am sure that about 20 years of your extended life span will be a whole lot better than going thru the pain of terminal Prostate Cancer. Can't wait to hear from you when you get to this beach. Al :cool:
 
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makenit1958 responded:
Not sure when you had your Surgery, but there is hope. I just turned 50 this year and found out two months later that I had Prostate Cancer. I chose to have surgery because I WANT to LIVE!. It is a very frustating situation that we find ourselves in. I had surgery on the 29th of September and have been seeing slow (to slow for my patience) but slow and good progress. The Kegal Excercises work, but it takes time to see it. Keep faith that life will continue, but please see that you have to be positive. We are too young to die. My prayers are with you.
 
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matthewsti responded:
I take offense at being told I have an attitude. I think I am entitled to have one and a bad one. Finding a happy place is not possible at this time. Trust that I have tried as I lie awake night after night. Did I also mention that I had no insurance coverage for ED treatment (Viagra) and there is no way to pay for it on my own. I appealed the decision with my urologist assistance and input and it was still refused. I am so frustrated and I can't see where time is going to help but thanks for your input.
 
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matthewsti responded:
Thanks for your advice. I had my surgery 21 months ago on 2/14/07. I was 49 when I had the surgery and have not been positive since. There really is no support to help with the emotional and psychological impact that the surgery has on a person. The dr said it would take 18 to 24 months to recover. I thought he meant physically but I think now he meant mentally. It takes that long to forget how life used to be and to begin to accept that what you are left with is as good as it will ever get. Life really sucks!!!
 
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mspt98 responded:
Actually life doesn't always suck, but it can get really difficult at times. I had robotic prostatectomy 2 months ago, the incontinence is going away slowly, the ED remains. Have to use penile injections with trimix to have sex with wife. She's not very happy with this but as in the Jack Nicholson movie, maybe this is "as good as it gets." Don't give up! I'm young (relatively) like you, 52, I do believe in the long run we will see the wisdom of our decision to have this surgery. Try to stay positive, I try every day.................
 
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Hop57284 responded:
Sorry to hear about your negative attitude towards your Surgery. If you look on the other side you could have been "DEAD". Think and look positive, life will never be the same but it will get better.
 
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acailteaux responded:
Matt, I did not mean to offend you but just expressing my feelings when reading your post. I admit that I am not in your position as my cancer was caught at the age of 62 and my Prostate was not removed. I do believe that we HAVE to have a positive attitude toward this and go on living your life as best as you can as you can not change the past but can control the future. Still, seven years later I run around with a high PSA reading and this cancer somewhere in my body while still taking my medication. I have to live with it, including all the side effects and one being no sex in over seven years, to the best of my ability. It makes me feel sad :sad: to see someone so distraught over what their cancer has done (the operation might have eliminated the cancer entirely) and not looking towards the future. Remember that there could be a nice beach where you can relax and meet some beautiful woman that you can spend the rest of your life with. IT IS NOT IMPOSSIBLE. Good luck to you. AL :cool:
 
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matthewsti responded:
I get so tired of everyone saying try to stay positive and it will get better. I am 21 months post surgery and I still can't see positives from not having sex the rest of my life. I think I would be able to accept it better if the surgeons were honest up front and let you know how bad it's going to be and may not get any better. I am overwhelmed with the medical bills which have gone into collections. I will try to stay positive every night when I put on my Depends so that I can relax enough to go to sleep and not have to worry about wetting the bed. I can hold it in when I'm awake but not when I sleep.
 
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palos responded:
matthew, nothing i say can change how YOU feel. Prostate Cancer is very demoralizing. I was older than you by 8 years when I had my prostatectomy - that was 4 years ago. I have had to use a compounding pharmacy "mix" via injections to get erections. My wife has been very good/patient with the lack of spontaneity but we have had good sex again. It didn't happen over night. (On a scale of 1-10 I would say eight). No ejaculation and some minor pain upon orgasm but it's still good. My doctor in West Michigan says the best procedure his office does is the "male sling" for incontinence. You DO NOT have to remain incontinent. Don't rush into anything (heal, Kegals etc) but if none of that works investigate the male sling - an out-patient procedure. With all the other negative stuff it's unfortunate you have to deal with medical bills also. I hate that. Hopefully you can find some other prostate cancer survivors in your area to talk to - it's hard to find guys that don't BS you though - they all want to sound so tough. Do the best you can. I'm a Christian (they get sick too) and will pray that you can experience a measure of peace sometime in the future. Palos
 
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Allan83445 responded:
matthewsti, I have been reading your words and can only tell you that time can help heal you both physically and emotionally. Hang in there. And while your hanging in there you need to find a doctor that will prescribe trimix or bi mix. They are very inexpensive. Depending on what dosage you end up needing, it can be as low as a couple of bucks a shot. It certainly helped me. All the best to you.
 
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sassy2775 responded:
MATTHEW, MY HUSBAND IS GOING THROUGH THE SAME FEELINGS YOU ARE. HE IS 25 MONTHS POST OPP AND WOULD LOVE TO GET HIS HANDS ON THE DOCTORS NECK THAT DID HIS SURGERY. SINCE HIS SURGERY HE STILL DEALS WITH 'LEEKING' AND THE ED. NOTHING HE HAS TRIED HAS WORKED FOR THE ED.HES BEEN ON VIAGRA,CEALIS AND THE OTHER PILL AT THE HIGHEST DOSAGE TOO. HE HAS ALSO TRIED A PUMP OR VAC AS THE DOCTOR CALLED IT. HIS DOCTOR TOLD US REPEATEDLY BEFORE AND AFTER SURGERY THAT WITH IN 12 - 18 MONTH THINGS WOULD BE BACK TO NORMAL HE HAS TRIED THE KAGEL EXERCISES BUT THEY DON'T WORK FOR HIM. WE EVEN PAID OUT OF POCKET $150.00 TO SEE THE 'DOCTOR' THAT DID HIS SURGERY ONLY TO BE SEEN MY A "INTERN" AND GET TOLD THAT THIS IS NORMAL AFTER HAVING THE PROSTATE REMOVED. WE WERE TOLD OF A SHOT TO THE ED,BUT HE REFUSED TO GIVE US A SCRIPT SINCE WE HAVE NO INSURANCE. THE ONLY COVERAGE MY HUSBAND HAS NOW IS THROUGH THE VETERNS HOSPITAL, TO BE HONEST THEY ARE WORTHLESS IN THIS STATE. THEY HAVE NEVER HEARD OF THE SHOTS AND WHEN WE ASKED ABOUT THE PILLS FOR LEEKING THEY GAVE HIM SOME GENERIC STUFF THAT MADE MATTERS WORSE. HE HAS SAID THE SAME THING ABOUT IT BEING A MISTAME HAVING SURGERY. ALL WE CAN DO IS TAKE IT ONE DAY AT A TIME. HE STILL HAS GOOD DAYS AND BAD DAYS WHEN IT COMES TO THIS. WE WERE GIVEN THE OPTIONS BEFORE HE CHOOSE SURGERY BUT WHERE TOLD THAT HAVING THE RADIATION SEEDS PLACED IN THE PROSTATE HE COULDNT BE NEAR YOUNG KIDS OR PREGNAT WOMEN WHILE THEY WERE IN,WE AHVE GRAND CILDREN THAT COME HERE SO THAT OPTION WAS TRASHED ONLY TO FIND OUT LATER WE WERE LIED TO.THE ONLY OTHER OPTION WAS CHEMO BUT THE UROLOGIST KEPT PUSHING FOR SURGERY SAYING IT WAS THE BEST OPTION. TO US IT WAS FOR HIM SINCE HE GOT PAID VERY WELL FOR IT. CANCER IS AN UGLY WORD AND WHEN YOU FIRST HEAR IT YOUR SCARED,CONFUSED AND FRIGHTENED. AND THINK THE WORST. WE WERE TOLD TO SWITCH TO DECAF COFFEE THAT IT WOULD HELP EASE UP THE LEEKING, WE TRIED THAT AND IT DIDNT WORK. AS SOME HAVE SAID SOME THING WORK FOR SOME PEOLE WHILE ITS NO HELP TO OTHERS. WE JUST KEEP HOPING AND PRAYING THAT SOMEDAY SOON THE LEEKING IS GONE AND THAT WE CAN GET SOMETHING FOR THE ED. WE WISH YOU THE BEST,AND HOPE THINGS CAN GET BETTER FOR ALL OF US. STACEY
 
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matthewsti responded:
I couldn't agree more. In addition, my surgeon was the most difficult to get in touch with. That should have been a clue to me. You can never call him and get to him or have him return your call. You have to pass everything thru his female nurse which can be very difficult to discuss some of this with her. On the morning of my surgery which was at 6:00, he informed me in the prep room that he would not be able to see me again until the next day because he had to go somewhere. What was I to do? Get up and leave right then is what I should have done. By the next day when he came to see me I had been in so much pain and suffering and his only words were, "sometimes this happens". I laid awake in pain all night and it was only at sunrise that the nurse said we could have given you a sleeping pill if you had asked but now it's morning and we can't. They just aren't honest with you going in and that's what infuriates me the most. I am 21 months post surgery and can't move on. I still think about the mistakes made and dwell on them endlessly.
 
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sassy2775 responded:
The surgeon my husband had was "wet behind the ears" he said. Only seen him once before surgery, that was for the double scopes to be sure the cancer hasn't spread. The doctor was told then that Gary (hubby) has never taken any thing stronger than tylenol. He said ok we will be carefull with his pain meds. yeah right. the day after his surgery he was so far out of it he barely knew who i was.I asked the nurse how often he was getting pain meds and what kind.She told me he was getting 2 shots for pain every 4 hours weather he asked for them or not. I was so mad. i went to the nurses station and demaned someone call the stupid doctor. Of course all i got was his nurse,that tried to tell me i had no idea what its like afte surgery. I told her off basically since i have had a total of 10 surgeries in my life and 2 of them were major back surgeries i do know what its like after being cut open. she then told me that he needs to get up and walk, i informed her its not possible since hes so drugged he cant even keep his eyes open. the next day the doctor came in and removed the drain tubes, not easly either,and told gary if he didnt get up and walk that day he was being moved to ICU. 2 week after surgery we seen one of his interns who told us hte catheder had to remain in for 2 more weeks. After it was rmoved Gary asked them about using pads for leekage,the doctors exact words were" you can if you want but you won;t need them" what a lie that was. Gary thinks about the mistakes and all too.When he gets very upset he tells me he shouldn't have had it done, he should have lived with it. He wouldn't have opted for surgery if the doctor hadn't told us (his intern i should say) that after surgery the only difference would be he wouldn't be able to ejackelate and may need a small dose of Viagra to help with an erection. When we went in a few months ago of course the doctor that did the surgery just happend to be doing rounds at the hospital after we were told the day before that we would see the dotcor himself. We wouldnt be so mad or upset if we weren't lied to and if we weren't getting avoided. To us it seems they dont; take what hes going through seriously. I swear the next doctor that tells him he knows how he feels may get knocked out. the last intern he seen tried telling Gary he understood completely and knew how he felt.So we asked if he;s had the same surgery he said no.I looked at him and said'how in the world do you know how we feel then' he couldn't respond to that of course. i agree if they would tell the truth from the begining this would be easier to deal with. If they came out and told everyone eactly what to expect after surgery it would be so much easier, Hope everyone has a nice Thanksgiving. Send some warm weather to New York too please.its cold here only 34 tonight with nore snow on the way :pbpt: Stacey
 
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chucktoo responded:
You're preaching to the choir here. Many visitors and contributors to this website are either not with us any more, or are battling incurable cancers. Yet, you have the lousiest attitude of any I've seen. You have debt? Work out a time-payment arrangement. Divorced? If it was because of your prostate cancer, I suspect either the ex didn't have the character to respect her wedding vows, or she was fed up with your attitude. Incontinence? It still beats the alternative. Dump the "poor me" attitude and start thinking constructively. That's what got the rest of us through it. Your character and future happiness (yes, it will come) will be determined by how you handle this. And, there are plenty of women out there to whom sex is a whole lot less important in a mate than sincere affection and consideration.


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