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impotence

Billybumps
Posts: 18
Joined: Aug 2003

I am 44 years old and had a radical prostatectomy 6/4/03. Now, 14 months later, I still cannot achieve an erection on my own. I do, however, get an erection when I use caverject injections. It is not the same though, and the erection I get from this medication is painful. Do you think I still have hope in recovering the ability to obtain an erection on my own? My doctor seems to think that if it hasn't happened by now, then it probably won't happen. I hope he is wrong. I realize that I should be grateful that I am currently cancer free. All of my PSA's since the surgery have come back undetectable. I just get so depressed, as selfish as that may sound. I am still a young man and this horrible disease has made me feel so empty. I used to be able to look into my wife's eyes and get aroused. I can't do that anymore although I love her so very much. I feel as though I have let her down. Again, I am sorry for whining when I should be thankful, but I just can't help how I feel. Thanks so much for listening

mroberts
Posts: 3
Joined: Aug 2004

Hi Billy, Your message really touched me. I was 49 when I had the surgery. Based on everything I read and what the doctor told me, I really thought I would recover erectile function too. I am now almost 3 years post op and I am still totally miserable. Its like I am not really a man anymore. For the last year I could not sleep through the night and I lost about 10% of my weight just out of depression. Maybe I can offer you some encouragement though. Caverject still hurts but much less than before. Somehow the needle hurts a little more but the Caverject hurts less and less. I started seeing a psychologist a couple of months ago to help me deal with the depression, and I think it is helping. I am so ashamed of my impotence, I could not talk to anyone else other than my wife, and I hate to burdon her. Also I joined a men's cancer ministry at my church. We help each other a lot, though I am too embarrassed to tell anyone about my drug dependent sexlife. Nevertheless, like you I haven't given up believing I will recover. I will pray for you. If you are a believer, here is a verse that helps me when I get morose, Phil.4:4-9.

Mark58
Posts: 41
Joined: Jun 2004

I am sorry to hear about your impotence. Specially since I had my surgery only 5 months ago. I am 58 and was told by my surgeon that if I wasn't having any erectile problems before surgery I shouldn't have any problems after. I haven't had any erections yet and am also starting to be very pessimistic about ever having another natural erection. I have the same emotional struggle, in that I feel I should be thankful that I am cancer free so far. My wife says not to worry, we will adjust to the new artificial erections. I am truely thankful and fortunate to have her, but the depression over the loss of our love life, as I had become accustomed to after 35 years, continues to grow. I have been seeing a therapist but he's not much help. I had no luck with the pills and the vacuum pump is also unsatisfactory. I am now starting to try the caverject. It was painful the first time but I'm going to continue with it. I am sure that my reply is not giving you the kind of information you were expecting or needing. This is a truely a mean disease and as many others have previously stated, none of the treatment options are "user friendly". I just wanted to write and let you know that you are not alone. There are too many of us out here trying to deal with this problem. There are several web sites like this one where we can share our experiences and vent our feelings. I might suggest that you continue to communicate openly with your wife and with us. It helps! Good luck and God Bless!!

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I would be blessed to have the lack of sex with no cancer detectable and you should be too! Some of us are beyond a cure and younger than most. I won't bore you with the details as its not your problem, but I would give anything to be alive when my son graduates from high school. It could happen!

mroberts
Posts: 3
Joined: Aug 2004

I am sorry to hear that you are suffering from what sounds like stage 4 cancer. I can see why you would scold us about our concern for sex when we could be dying. I don't think I am alone in saying that I am indeed thankful that God has spared me at least for the present. If you were to speak with a thousand men who suddenly lost their ability to have sex with their wives, I think they would almost all agree that it was a terrible loss. All I can say is that we are among such men. It doesn't really help much that we also had (have) cancer. I for one cannot talk about this to my friends, family or even my doctor. But here I can let my hair down a bit, as perhaps you have vented your anger a bit too. We all keep a stiff upper lip with our wives and families. You sound a little bitter, but we accept you and do not ask you to hide your fears or your hopes here. My heart go out to you in your suffering that I have not experienced.

bicdawg
Posts: 9
Joined: Feb 2004

Hi Billy D,
I'm 52 and I had my RP 03/17/04. I have had some movement but nothing to bragg about. I inject myself for ED. I also take Red Gin Seng exstract and I have notice some frimness. It's only been 5 months and I have noticed some improvement considering they could only save 50% of my nerves. Check it out on line and don't give in. I would give it 2 or more years before I had something done. (Korean Red Gin Seng Exstract) It's expensive about $150 for a 320g bottle. I take a gram per day. They recommend 3 grams per day. Your young, so your odds of success are better than mine.

Florida3
Posts: 1
Joined: Sep 2004

I am truly grateful to be alive. I had PC at 38 and I'm now 40 and cancer free. Still working at my sex life, please be patient, it's too early at 5 months or even a year to expect to get it back. I always try to remember, it took 38 years to get the way it was-45 minutes for the Doctor to change it all-and it ain't going to heal overnight. Currently use Cialis. But have recently had sex without using anything. It's not anything to write home about, but it's a start.

MK1965
Posts: 177
Joined: Jun 2016

Grinder,

Here are people who suffer badly after RP, bad cases of unrecoverable erectile dysfunction even for very young guys.

See for your self and then judge all of us who were expected and told by our docs of not having any reasons not to have good recovery of erectile function and we are at terrible loss.

I am reading this forum from backside and found so many who did not regain erectile function.

I would certainly trade my loss of sexual function after RP for one that would develop years later down the road after RT.

i, dry probably, would not miss sex at age 65 as much as I am missing it now at 53 and being almost 17 months post RP with zero results and no sign of life in my penis. Should I mention that my erect penis is 1 inch of shaft and penis head (glans)?

Whole this ordeal tota derailed my relationship with my wife. She is post menopausal now and distanced herself from my problem. She pushed me to have surgery and now, we are in two different worlds, nothing to bind us together.

i will bring to life other old treads just to proof that RP makes thou and thousands of guys loose their QoL.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

MK1965 -- "a man on a mission."  We've all gotta have some purpose in life.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

MK1965 

Thanks you for warning others about potential major side effects from surgery. 

You are a hero.

Grinder
Posts: 441
Joined: Mar 2017

Pasting this from discussion about penile shortening...

"MK... you think your issue is with RP... no, your issue is the same issue we all have... who do you trust to give you all the variables to make the right decision for YOUR case. Your crusade should not be against Davinci surgery, your crusade should be against urologists that do not give the patient enough information to make the decision for his quality of life post-op. In my case, I was lucky because my GP was a accomodating with my reticence when I felt i was being hustled."

 You and H&O continue to ignore pertinent variables that must be assessed prior to RP, and that is the responsibility of your urologist. 

Will someone come to this thread that RP would be in their best interest, but will shy away because your urologist failed to inform you of the side effects that would directly affect your case?

Do you really want to be responsible for someone who shies away from RP and may even risk their life with prostate cancer just because of your experience?

In my situation, i am fearful that i might have seen posts like yours and H&O's and  changed my mind avout RP... if i had it would have been the  BIGGEST mistake of my life! 

Do you really want that responsibility? 

I keep telling you guys about my neighbor... you keep ignoring it. What  would he have given to have an RP before his PC got out of control? I could go to his grave and ask him, but he wont be able to answer. PC is the silent killer. He didnt know he had it because he was a "what do I need a doctor for" kind of guy. He was one reason i got the RP. He warned all family and friends before he passed... it was not a pleasant way to go either. 

Since no one else has the guts to say it, i will, because i could care less if anyone thinks i am a "hero".

If you are considering radical prostatectomy, and your penis is shorter than 3" , opt for open surgery instead, because robotic RP can't lower the bladder when reattaching the urethra.

That is  the entire issue here. And every urologist should be informing patients of that VARIABLE.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

" You and H&O continue to ignore pertinent variables that must be assessed prior to RP, and that is the responsibility of your urologist"

Not ignored, did lots of research about surgery and the major side effects, so no way will I have, or recommend this barberic treatment.

Grinder, how many posts are you going to make to respond to this? I think that your average is three or tour.......

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

I have not bothered to do an exact count, but Grinder is pretty much matching you 1:1, H & O.

max

Grinder
Posts: 441
Joined: Mar 2017

Btw... comparing quality of life, who would opt for proctitis over ED? Dont answer that until you consider you might get what you're asking for. Read the tragic anecdotes from radiation burn versus the tragic anecdotes of ED from RP, and everyone can judge for themselves which is more horrifying.

I dont like playing devils advocate for fear i may discourage someone seeking radiation therapy when RT is their best option. But with your irresponsible condemnation of robotic RP, i have been forced into this role. I do it out of concern for those that need robotic surgery as theit best option. I am certainly not getting paid to do this, and have no idea why i am bothering to point out the hysteria and lack of dispassionate scientific reasoning here. 

Rather than be cast as the villain, i dont need this. My life is great, even when my infected prostate kept me from having sex for some five years for fear of infecting my wife with Staph. Because I have a grateful heart for what i do have, and i am still alive to appreciate it. And i dont need to have angry people disparaging me for pointing out the unscientific approach they are taking to condemn Robotic RP.

There is no magic wand, no magic pill, no fairy dust when dealing with prostate cancer. You weigh the risks with each  treatment, how it applies to your specific case, and surround yourself with competent professionals to minimize side effects, and then pray a lot. If you are not right with God going in, then you better get right with God when dealing with the side effects afterward, regardless of the treatment option you choose.

I should also mention, there are no "miracle cures" either in this age of faith...  There is no parting of the  Red Sea or cleansing of lepers..., all miracles are covert actions that can be understood only through the eyes of faith... God only made this promise to us in this age of Grace through faith:

And we know that all things work together for good to them that love God, to them who are called according to his purpose.
 
 As the song says, I've said my peace and i leave it all up to you. I'm done being cast as the badguy. Let everyone reading this decide for themselves who is being reasonable and who is not.
Clevelandguy
Posts: 456
Joined: Jun 2015

Hi All,

MK & H&O are never going to say anything good about the surgery option for Pca.  First of all H&O has never had surgery, kinda like taking car advice from a person who has never worked on a car.  You can read books but you get good experience from working underneath the hood. MK has had a bad experience from surgery but like you said Grinder there are variables that can make your surgery go bad or go good.  MK & H&O you really need to watch what you are posting because people come to this board for honest experiences, and H&O you have none as it relates to surgery.  MK we all feel sorry for you and your bad outcome but there are several people here who have had acceptable/ good outcomes.  Not fair to bias people against ANY treatment option, again I say ANY treament option.  H&O said "so no way will I have, or recommend this barberic treatment."  Surgery is a a valid treatment option and is getting better with the advances made in medicine.  H&O you really need to re-think your thoughts for someone who has never had surgery, saying surgery is barberic does not bode well for your credability on this subject. Surgery is never a barbaric treament option but possibly not the right selection for certain cases of Pca.  Any don't say you and the pro surgery guys are all alike & will always support surgery.  I think most of us including me support free choice based on facts and actual experiences not someone's opinion from which they have no experience(that discounts MK, he lived it and he should tell his surgery outcome.)

Dave 3+4

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Grinder, you are fighting an uphill battle.  And hopefully any newbies who might read the above thread will proceed to the end to see your warnings to MK.

Certainly there is serious potential that venomous attacks or even simple tales of "worst case" outcomes from ANY procedure could possibly sway a newly diagnosed individual away from seeking treatment.  For that reason, I am reluctant even to tell my own story when neophytes post questions regarding continence in particular, for fear of scaring them away and possibly affecting their willingness to undergo treatment.

Max - it took me quite a while to figure out just where H&O is coming from, and while I hate to simply disregard any sort of useful information, I do tend to find myself just skipping over some posts.  Lets just say I always read yours and Vasco's.

It is indeed difficult to not feel bitter and cynical when "life after treatment" is not everything we had hoped for.  And personally I harbor tremendous resentment toward my original urologist for having never been forthcoming with information.  He never even mentioned the word 'cancer'.  It wasn't until I switched to a different doctor that I discovered that I not only had cancer, but that it had progressed to the stage of being very high risk.  And with my wife then being diagnosed with stage 4 lymphoma within months afterwards, I have good reason to feel fortunate - blessed even, that we are still alive and that I did not end up like Grinder's neighbor.

Count your belssings, everyone. Each day is a gift.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Dear Max, Grinder, DAve and Rob,

After reading stories from, and speaking with many men who have had significant side effects that may continue through out life from surgery,  I am an advocate for other treatment options that are available.  Many who are  eligible for Active Surveillance, simply monitoring, as I am doing, instead  elect to have intervention of surgery or radiation, with immediate consequences and   potential long term life changing side effects. Studies have shown that there are similar cure rates betweeen radiation and surgery; however radiation generally has less side effects.

Some of the members of my fan club are examples of men who have had bad outcomes, but still persist in avocating  the procedure, and also  who instead of simply monitoring the disease of which they were eligible,  elected to cut it out with potential side effects. Frankly I cannot understand the logic of men seeking and advocating a procedure where great side effects commonally happen. 

 

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I meant no offense.  As I said, still trying to figure out just where you're coming from.  Because we don't have sig's on this msg board, we don't know everyone's story.  Even on such forums, we never see the whole picture.  If you are fortunate to have a low grade PCa, then you're lucky to have options available.  I was told that I was not eligible for some forms of treatment.  In the end I had a whole bunch of them.  I know Vasco has a chronic condition that could potentially take his life... let's call it essentially untreatable.  And Max has been thru another cancer as well.  Me, I've had over a dozen surgeries... just counting scars, and each has a story behind it.

So when it appears that someone has a particular agenda, well, some may wonder whether or not this is someone talking from experience.  I'm sure you have a story also, everyone does.  Not trying to discount your opinions on anything. But for people with cancer, in many cases wait and see doesn't work out well, no matter what they may call it.  As I mentioned earlier, my doctor never told me much, just wanted to keep doing biopsies.  As an engineer, I believed that repeating a failed test is not likely to result in an outcome any different than it did the last time.

And sometimes stuff just happens, or doesn't work out. Planes crash and bridges collapse. Doctors witness horror stories every day... but it is not THEIR story.  It's not until something happens that involves YOUR body and affects YOUR life that actions have true meaning.  Again, nothing personal... but sometimes those who have endured some of the worst experiences tend to come out of it thinking well, that wasn't so bad.

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi All,

Unless you are up in years I don't see how AS can put off the inevitable decision of surgery or radiation somewhere down the road.  AS will give you time to spend on selecting the best form of future treatment.  Yes if your cancer is small and non agressive maybe, just maybe you can beat it by waiting it out.  But for some of us with 4 and above ratings AS is not an option unless you want to fold up your table and go home. Both Surgery and the various forms of Radiation ALL HAVE SIDE EFFECTS.  If people on this form have not had any side effects from surgery or radiation I wish they would speak up, I doubt there are few.   It's a choice that most 4+ Pca patients will have to make at one time and we need to share our experiences with them, not condem certain treatments base on our own personal bias.  There is no magic wand to waive that will take away our cancer. Everyone is free to choose but they must understand the consequences with that choice.  There are no Mulligan's once you choose your treament, so study the side effects carefully.

Dave 3+4

hopeful and opt...
Posts: 2224
Joined: Apr 2009

If you click my name to the left, you will be able to see all pertinent information to my case; all test results and diagnostic tests. I hope that this will be edifying. 

Dave, monitoring with Active Surveillance is not age dependent, since studies have indicated that many men die with, not because of prostate cancer. Here is an autopsy study that confirms this.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4682465/

Approximately 70 percent of men who qualify for Active Surveillance will die with, not because of prostate cancer, and aggressive treatment such as surgery or radiation will not be required, thus eliminating over treatment.  Of those 30 percent of men who have aggressive cancer in sheeps clothing, these men who are monitored in an active surveillance program will be able to be treated with what they would have choosen.

I am currently in my tenth year of being monitored; so I have had success during the last ten years, not having any of the horrible side effects that so many of my brothers have had with radiation and surgery. I hope to continue for the rest of my life.

Dave, you mention Gleason 4; well I also have a 3+4 but low volume, so I am fortunate to be able to continue with active surveillance. Other men with similar and less Gleason have elected to OVER treat with surgery, etc and suffer significant side effects.  

Dave, it is not inevitable to have surgery or radiation treatment. You are misinformed, in fact where I am treated, there is a man who is in his 30tiest who is in the same program, and had a baby with his wife.

I hope that you and others find this informative

 

fishinguy
Posts: 18
Joined: Dec 2017

Just had my 6 month PSA tested a couple weeks ago, still <.04, undetectable.   Yep, six months after my successful Robotic Surgery.    Seems like a lifetime ago since diagnosis, but really only nine months.   Time is an intesting dynamic.   So much to learn for all just beginning to visit these forums.  I started reading foums after diagnosis and decided on surgery relatively early on.  I problably should have research radiation more than I did.  I would recommend all to do so who are new to this.    I was diagnosed with a G4+3.  

My urologist, and subsequent surgeons, all discussed radiation a bit, and the surgery itself, the process and potentail side effects.   No one held anything back, but I also got the best information when I asked better questions.   That's where these fourms help, you learn and can ask your providers better questions.   They all gave me good information, but they also are optimistic about what they do.   For those new to this, you as a patient owe it to yourself to dig in deeper for better clarified information.   

I'll admit, once I scheduled my surgery, I was worried about long term ED and urinary issues.   Who wouldn't after reading stories online.    But I believe people who have no long term issues don't really stay on forums for the long term.   I myself have started to stay away, as I want to put this whole cnacer thing behind me.   But, at six months it still stays with you.   So coming back to these forums still helps.

My point.   (Sorry it took me so long to get to it)   I have never had any leakage since my surgery and catheter removal.   Not once.  I sleep through the night without getting up to pee, just like prior to surgery.   I had two erections with a catheter in.   I started Sildeafil 7 days after surgery, cathetre in for 14 days.   I have had pretty good erections for the last 6 months.   I'm not 100% yet, but good enough for a good time.    I think Toby Keith sang it best "I ain't as good as I once was, but I'm as good once as I ever was".   I fully expect to be much better in a year, I'm shooting for 100%.  And why not.

Was I lucky?    Sure.  Did I get to a really good surgeon?   Yes, I sure think that was part of it.  And I found him by asking questions.   I was also healthy going in, and younger, 56.    Trifecta!!    I have others ask me for my opinion, I always give it.   It's always the same, Check all your options and pick the best one for you, and most importatnly trust your gut.   Oh, and no guarantees for anything, short term or long term.

I don't look at my treatment as barbaric at all.   I look at those six scars every morning in the mirror.  Along with my three appendectomy scars, I look like a bad-*** who survived one heck of a knife fight.   Some Halloween I'm going to fit that into a costume idea.  I feel very fortunate that I had robotic surgery when I did.   One last opinion, and it is only my opinion, I never think of anything will be worse in 5, 10 or 20 years than it is today because of treatment choice.    That was my one recurring concern last summer when researching my options when thinking of radiation for the long term.  

Rickdean
Posts: 17
Joined: Mar 2018

March 2018:  I'm a normal Kansas guy employed as a barber.  5'10" 210 pounds...I drink beer, eat beef jerky, pickled eggs and I can walk 2 miles no problem.  So pretty much I'm a normal midwest fellow. 

I'm 59 and my PSA had bounced to 4.0.  Gleason 4+3 on biopsy.  (that's another thing....the biopsy is painless if the doctor numbs it first.  Numbing shots were a little startling but I was in Walmart walking 20 minutes later)  Topeka Kansas Dr. Branstead.  He prescribed .5 Valium and .75 Hydrocodone to be taken 40 minutes before procedure.  Please get yours done the same way.  Getting my teeth cleaned is more annoying than a prostate biopsy! 

Prostate removal is a piece of cake:  2018 KU Med

Friday - March 9th Surgery

Saturday - March 10th Home that afternoon

Wednesday - March 21st Catheter Removal

Saturday - March 24th Raquette ball and bowling  (and beer)  

TOTAL bladder control at the time of Catheter removal.  No drops when coughing, sneezing, jumping or sleeping.  Sexual functions are better than before surgery.  Erections included!  Also I'm proud to say I had a big erection with catheter in.  It was kind of scary!

 The living room couch is the best overnight sleeping situation when hooking up to the large piss bag is a must!  Catheter is a real annoyance and the tube in your pecker is the size of your little finger!  Yes its that big! 

During the day I did not use any piss bag....I just plugged the hose and every hour I'd remove the plug and drain.  I did use Anbesol toothache medicine to numb the tip of my penis.  That helped a bunch.  No pain on stomach wounds.  A little bleeding but no pain at all.  

No fear...Looking back I wonder why I was all scared.  Just get it done.  I have more energy now because I don't get up 4 times a night to piss.  Once and sometimes none. 

Nothing to fear guys....I got my surgery at KU Med.  The best in the nation!

Clevelandguy
Posts: 456
Joined: Jun 2015

Well put guys, great comments, organ confined surgical removal is not barbaric, just another way of treating Pca. Hope you both have very good recoveries and non exisitent PSA numbers for years to come...........

Dave 3+4

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