Post op 10 days ago

Hi I'm new to this. I' m 60 & was diagnosed with prostrate cancer just before Christmas and have had robotic surgery 10 days ago. Everything happened so fast. I hope that Iv made the right choice by having the surgery. I'm still in a lot of pain at the moment. I go back to the hospital this Wednesday which will be exactly 2 weeks from surgery, to have the caferther removed. I am feeling very anxious about the whole thing. I'm really worried that I will not be able to control my bladder properly & there ll be little chance of any erections again. Before I had surgery I had no problem with erections, every morning I woke up with a nice erection but from what Iv read this isn't going to be the case again. I have t got the follow appointment yet to see the consultant who did the surgery apparently it's 6 / 8 weeks after surgery that you go back to see him. This appointment on Wednesday is to have the caferther removed, I am so sick of this thing inside of me, I can not wait for it to come out. It is now beginning to hurt at the end of my penis. Can any one give any advise regarding anything ? Regards Mike

48 Replies

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  • Hi Mike. You'll feel better once catheter is out--a painless procedure--/over before you know it

  • Hi Mike, you are still early days yet and given time you'll feel better. I think your apprehension is normal after all this was the first time for all of us that we had anything done like this;-). The catheter removal once they do it is over in seconds and whilst you may not have good bladder control to start with, don't panic if you don't, it will return. I had to wear some padded pants for a while, then eventually some little shields which fit in the front of your pants and then in a few more weeks you'll be more or less dry hopefully. The pads are a bit inconvenient but they give you bags of confidence and you can start to get on with life again. It's important to continue the pelvic floor excercises by the way which ought to become a way of life as you continue. By the way you shouldn't have to wait to see the surgeon again if you're concerned, try to speak to your specialist nurse. They have all the answers!

    I had a radical prostatectomy in 2012 but it wasn't by robotic surgery. I think sometimes now, depending on the extent of your cancer they can preserve the nerves better which will also preserve partially your erections. Your surgeon or specialist Macmillan nurse should be able to tell you what you are likely to expect in that department. My cancer whilst it hadn't penetrated the outer capsule of the prostate, was very close to it and they told me afterwards that they weren't able to do the nerve sparing surgery so in my case really good erections are a thing of memories for me. Again talk to specialists about this or your GP as there are sometimes ways around this. The way I look at it is that I'm better off living a longer life without erections than a shorter life with! You might be lucky though a still maintain some of the physical functioning down below. I hope you do. Above all give it time and don't panic, there's a good life after prostate surgery :-)

  • Thanks for your reply & advice. This has been a dark journey for the past 3 months & is still going to be. Since surgery Iv been very up & down, very tearful at times, crying out for no reason at times. Yes I do agree with you, it's better to have ( hopefully ) a cancer free life than have a sort life just to have good erections.

    It's a case of taking one step at a time, it's only 2 weeks tomorrow from surgery, the surgeon told me before the surgery that the cancer as far as they could tell was confined within the prostrate and he hoped that he could do spare saving surgery on one side. ( right side ) as the cancer appeared to be on the left. Time will tell. At the moment I do feel as though there is feeling / sensation around that area, but no movement of any kind in the penis.

    At the moment I just want this catheter taken out & try & get back to some sort of normality of weeing. I do hope that I HAVT got to have any further treatment like radiotherapy or chemotherapy. I prey that they've caught all this cancer.

    I also hope that I made the right decision in having the robotic surgery as all this happened so quickly & im not 100% sure there was enough time to check all the different types of treatment out there that's available . I was told that my grade of cancer was an aggressive type & I should't leave it to long in making a decision in which treatment to have. The only 2 treatment options they offered me was surgery or radiotherapy.

    At one point my son & I did look into the proton beam THEARPY that is available abroad but not in the UK. But time was against us to take that option any further. Also recently Iv read about canisbiss oil which is supposed to kill the cancer.

    Not sure if you can throw any light on any of those alternatives.

    Look forward to hearing from you.

    Regards

    Mike

  • Thanks for your reply, no I have not, never thought of that, thinking of that now would of properly helped.

    I have it taken out tomorrow. So pleased to hear that u have gained bladder control & erections back again.

  • You made the right decision .You have to keep making the right choices.You mention hope.That what it all depends on.At times I felt like rolling up in a ball and dieing.Its common to go thru those emtions.But if you give up you are done for.Hold on to hope and for me it the most important thing.Many have gone before you and had good outcomes.You can too.Google Rick Simpson canaby oil.Ive personally done the 60 gm. In 90 days.It levels You at first ,but then you build a tolerance. I've tried anything that I believed even a chance of working.It has many benifits,if at times just relieving stress.Good luck and any question that you have can be answered from those who have even there.Nutrition is key.Go all out on a heAlth kick.Things can always get better if you are proactive in every way.But remember they can always get worse if you don't take care.Iws stage 4gleason8 metastatic ,non operable.Kidney failure tubes o out of back for a year.Pure he'll.Sonindid all I could.Now no signs..But you can't stop praying and hoping for good.Dont listen to nasaerers,Follow your path to improving your health.That impowers you,when you feel that you are doing something anout it.If I can do anyone can.

  • Thanks for your reply.

  • Mike wrote:

    "Also recently Iv read about canisbiss oil which is supposed to kill the cancer."

    As I understand it, there is some evidence that cannabis has some effect on tumors, killing off some cells. However I don't think that anyone has ever shown any evidence that it can cure anyone. Unfortunately, there are no known drugs that have been demonstrated to cure prostate cancer, though there are some that can pretty much completely control it, sometimes for years or, for some lucky patients, decades. New drugs keep being introduced and I'm hopeful that cure or, what is almost as good, virtually permanent control, will eventually become common.

    As for proton beam radiation, as I understand that, it works quite well, but not better than x-ray radiation. The best x-ray therapies have about the same cure rates as the best proton beam therapies.

    There is some evidence that proton beam therapy produces fewer side effects than x-radiation, however the evidence is controversial. Some studies found that it does and some found that it doesn't. There are theoretical reasons why proton beam ought to produce fewer side effects in tissue outside the prostate, but how much that makes a difference, and whether it's better than the newer x-ray techniques that move the beams all around the prostate or use brachytherapy to concentrate the radiation almost entirely inside, just isn't clear to me.

    There is a proton beam center in the Czech Republic that advertises 98% cure rates. I think those claims are similar to those of the urologist who said that 85% of his surgery patients regain full continence and potency. Claims like that make a ton of money for the Czech doctors and their investors, but I don't think they are true at all and a lot more than 2% of their patients will bemoan the fact that they wound up in the "2%" who failed treatment.

    Alan

  • Thanks Allan for your reply. Regards Mike

  • Sorry ,but I know one thing..and that is if they spared either side they must be pretty confident that they could get it all.If they had any doubt, they wouldn't risk it, they'd take it all. Did they do half??...........About catheders,I do know something about that.Hope that's out with no return.A blessed day if so.After foley ,U.T.I. Then I. Self-cathed until failure while waitng for a biopsy.came out w/tubes outta kidneys and foley then stunts inside and foley,1yr of constant UTI's massive anti-biopics.1yr. I prayed to be able to pee half way normally with out escruciating pain..Now im cool on that front.not like I was,but no pain.No incotenace,consider myself lucky compared to where I was that year.I wish you luck because everyone has different variables that effect recovery.I feel good that you will at least be better than I hopefully and just not torturing yourself by accepting you condition,and by putting only good things into your body.Im coming up on major 2nd year major testing for Tak 700..Sometimes it comes back , that's the truth..I notice now, I'm finally feeling lees scared of what"Could happen ".Takes time,if you are lucky enough to recover to ...gain a grasp on you new existence ...be positive and keep some optimism..It's a mental battle as well.Plan to succeed.....

  • Hi Mike, are you using ointment to keep the catheter lubricated where it enters your penis? I recall using neosporin pain relief ointment. Keep positive, you are recovering from a major surgery. I'm 1 1/2 years post surgery, bladder control did not take long and erectile function returned.

  • Thanks for your reply, no I have not, never thought of that, thinking of that now would of properly helped.

    I have it taken out tomorrow. So pleased to hear that u have gained bladder control & erections back again.

  • Bring pads! My doctor didn't warn me about this. They provided me with a cup after removing the catheter but it did little to stop the uncontrollable flow as I checked out. It was quite embarrassing to stand there talking to this staff of women while urine was streaming down my leg. My control had always been supreme so this was tough to deal with. It got better in the months to come but never close to my previous abilities, like from a 10 to a 3. I did physical therapy to learn how to do Kegels better but it really is still poor 4 years later.

    My sexual ability was even worse, rating zero. Pills do nothing, only injections give any results for me and they are not fun at all. They can be painful and don't always work, in addition to being expensive and not covered by insurance. I changed to another urologist that suggests the implanted pump.

    Sorry I don't mean to be so negative. I hope your results are better. Personally I wish I would have done the wait and watch longer. I also wish I'd looked for a more experienced urologist. I don't believe his claim of 85% of patients returning to normal at all. The government report seems more accurate.

    Good luck and it doesn't hurt to bring pads. In the beginning I needed the large size especially at night but now I deal with it and use the smaller size during the day if I will be out for awhile.

  • Thanks for your reply & advice in bring pads with me to the hospital tomorrow when they remove this catheter.

  • Wildlife lover what a handle.Ilove that!

  • Thanks Lulu! Animals are my passion, especially those in their natural environment!

  • WildLifeLuver wrote:

    "I don't believe his claim of 85% of patients returning to normal at all."

    I hate when doctors tell patients things like that. If "returning to normal" means "just like you were before the surgery", then I think his claim is total BS. I've read one study that claimed that 90% of patients have at least some degradation of sexual capacity.

    Alan

  • In 2006 I underwent a radical prostectomy by normal procedure leaving hospital with a row of staples from the Pubic bone to the navel I looked like a zip fastener.I left hospital with a catheter which was removed when I returned to hospital three week later for an overnight stay for the catheter removal I was concerned about my potential loss of control . Prior to admission I had been encouraged to practice Pelvic floor exercise (kegal) it works for women postnatal . Removal was done in seconds and completely painless I had no discomfort in those three weeks Regarding chafing or any pain .The willy pee control center had been on holiday for three weeks and sensors that has told me I needed to pee for the past three score + years needed retraining ASAP . I had no control I flowed away like a tap with no washer I had been provided with a container and gradually with concentrated effort I regained a modicum of control with in a matter of hours I was able to stop and start at will. I was not discouraged until I was able to demonstrate control. It sounds very childish but to get home and be able to pee into the toilet bowl and make it froth and then stop was one of the best thing to come out of the procedures. prior to the Op I would stand and pee a dribble extremely poor flow only to need to return within a short time to repeat the action . All this also had the bonus that my malignant tissue had been removed I have a 6 monthly PSA test and remain clear 000.1 and steady at that ... Since that time I was one of three or four patients who set up a prostate support group making local men aware of their Prostate standing in supermarket foyers with information leaflets we have regular monthly meetings and this Saturday are holding a PSA testing day the second year that we have done this ..

  • Thank you for your reply.

  • i had the same issues and concerns , im 1 year out 50 yo had robotic and it all happened so fast ...first the robotic was best route, catheter will be a interestingly unpleasant fading memory sooner than you think, pain at end is common but goes away once its out, inconvenience went away fast for me, the main thing is mental, and support one here is key which i didnt have till a few weeks ago...weird advice which i didnt get at first dealing with sexual function was urologist who said act like ur 16 again , another words masturbate stimulated as much as u can of course u have to personalize that, orgasms are way different which i didnt expect and i mean the sensation not the lack of anything coming out , be patient do stress ur self unnecessarily and keep coming here for support, good luck

  • Urologist , are a breed apart..at least if they are primarily a surgen, like mine was .My exellent uro saved me,but he didnt know everything.my onocologist is a prostate specialist he really made some moves that he made happen that seriously helped me..I still have a prostate, but it's virtually was obliterated and shrunk up from R.T & A.D.T...If they got it all , odds for success are on you side. Oh yah! Almost forgot..Onocologist told me that radiation olong with A.D.T. Was the nail in my coffin and for sure I'd never get it up again?That was the one thing he was wrong about.Truthfully when you go thru so much pain in your penis and body that it's not the most important thing you think of when things start to go to the positive side.Just happy to not be going down entirely.

  • the bad news is you can kiss your erections goodbye. The pump method is ridiculous and a torture chamber and painful. Leaves you with injections which are extremely expensive and there's bleeding involved in the injections, Cialis and Viagra work very marginally if at all. I know ten men with prostate cancer and not one of us can get a erection using any of those methods with the exception of the injections. all of us have good bladder control

  • Whoa...NOT SO FAST...you know this how? Don't extrapolate your experience onto this man.

    Some (I don't know the % who do regain "function" do you?) do have return of erectile function...taking up to 3 years to reach maximum improvement.

    Pumps in my experience help some...start with an inexpensive pump and see how you respond.

    Haven't tried injections yet...many report excellent results.

    Remember recovery continues for several years.

  • Boris, I had my surgery over 10 years ago. I have been to three or four prostate cancer men's group. Of all of us very few of us have been able to recuperate with normal erection. The only treatments that seem to work are the injections or the penal implant

  • Fair enough.

  • in in addition, with any surgery, there is a very minut and small population that might be able to achieve normalcy again without aids to achieve this; However it is the extreme minority. one continues to Hope that he falls into that minority. this is just the reality of the situation. The Palms are extremely painful and takes away from the sensation. The injections are extremely expensive and cause bleeding. Cialis and Viagra have only been marginally affective. The penal implant: which is the last resort. It also shortens your penis by at least an inch

  • Pumps not palms. Autocorrect changed my words

  • Hi Mike, welcome to the whine zone,

    I know the pain bro, it ain't easy. I used a pain reliever gel, from CVS. Catheters are a real problem, a real pain in the balls, so to speak. Especially when it gets caught on something and you about rip your penis off. Ouch! I had mine for four months, for a different problem, so it became Cathy Ter, my newest best girlfriend. I'm 57 and said good by to morning wood a long time ago.I think that after seven years of ADT, it has changed my mindset, and sex isn't what it used to be.

    Things I do are always try to have a positive attitude, a bit of humor, and come here just about every day. Coming here will open your mind to a thousand avenues we take to our end point. If I were at your at point in this, I would have a very good outlook. Men are being cured with RP and chemo.

    Good Luck going forward, Joe

  • Joe your experiences was the same as mine

  • Thanks joe.

  • Good advice again !

  • 123mike..., wow, after reading all the other comments, most of which were negative, I'm sort of at a loss of words. But..., and it's a big but. As a PC survivor of 24 years having had what you had done at age 52 (my surgery was open, not robotic) and having a cath in for over 2 weeks weeks, I get what you are saying. The ED and incontinence questions for you are still up in the air. Every guy and every procedure ends up with different results. Your physical healing and rehabilitation will improve with time. However, your mental rehabilitation and outlook on life going forward will depend on you and how you accept what comes or doesn't come back. There are options for both ED AND incontinence and use your medical professionals to advise you rather than try all kinds of "healthfood" BS and so-called "friendly experts". Sex is important, but life goes on and although this shitload of cancer happened, we should be thankful it was a cancer that has a good cure rate IF caught and taken care of. Also best to avoid the "doom-and-gloomers". Erections and Incontinence are not a problem in the grave.

  • Right on..life is the priority.

  • Many thanks for your reply.

  • Had RP 5 years ago. The catheter was unpleasant for sure but I did regain bladder control other than slight leakage with sneezes and hard laughing. As far as regaining an erection, I think you can help yourself by choking your penis at the base creating a false erection and masturbating (with lubricant) until orgasm. I am not kidding here; I did this and my ability for an erection returned. Note: my penis is smaller (about an 1" or so) post surgery which my doctor told me from rejoining the area vacated by the removed prostate. Hope that helps.

  • Yo Moe, there are sex toys that do that. Not that I would know anything about such things. lol

  • Hahaha. Good one! So personal to tell but who knows maybe it might help.

  • Many thanks for your reply. Mike

  • 123Mike, we all have been where you are now. Nobody wants to hear the C word, ever. As for deciding what to do, it is all a crap shoot. It is like choosing a flavor of ice cream. Surgery vs radiation vs cryo vs High intensity ultra sound. Results are about the same, but side effects vary. It takes time to get your head around all of these options. We do not always have that time. My own PC was aggressive and I could not get it out fast enough to suit me. I had been through other surgeries and was comfortable with the idea of R.A.L.P. I did not have any pain associated with the catheter, but was glad to get it out. Kegals are the name of the game to get your peeing under control. It took me three months to figure out how to stay dry. One thing about bladder control. It will never be the same as it was. Men get two urinary sphincters, one at the bottom of the bladder, the other in the prostate. Women are born with just one. Men are famous for being able to hold their pee for hours. You have now joined the women in being aware of where the nearest bathroom is. Before you could hold it off until one became available. Now you will have to be more strategic about it. Have you ever noticed how women make a bee line for the bathroom once they stand up? Now, you will too. That is why I employ the preemptive pee. You may not think you have to go, but will be surprised that you do indeed have to go when you get there.

    Now, about that sexual function. Use the pills early and often. Do not be disappointed if you do not see visible results. That can take a long time or not. They do stimulate blood flow to your penis and will keep shrinkage at bay. A penis that is not exercised is a penis that will shrink. I unfortunately could not tolerate the side effects of the pills. So, no pills for me. I used the pump, and did the shots (absolutely no fun at all). I do have to admit that despite being almost 6 years out from surgery, my prick is showing signs of life. We will see where that leads to.

    Keep us posted on your progress, or lack thereof. We all will be rooting for you.

  • 123mike..., along with what DHebering said, there is also the option of having an Artificial Urinary Sphincter implanted. Yeh, I know that doesn't sound like fun, BUT it's the option I and many others have had to go to when the incontinence gets to a point where pads and Kegals no longer do the job. Simple office procedure, overnight stay and after apparatus is activated, problem solved. Your Urologist knows all about them.

  • Thanks for your reply. Mike

  • Very truthful!

  • Many thanks for your reply. Mike

  • DHERBERLING, my experiences are the same as yours. This shrinking of my cock routine was NOT cool. The doctor never told me anything about penis shrinkage. My cock when from an 8" x 6" to a 6" x 5" after surgery. A major reduction in size. I never realize how GOOD it felt to wake up to a full hard erection..a very manly feeling. My "saving grace", if you can call it that, is I still fill my pants in the way way because I have large testicules and my visual presentation , in how I look like and fill out my pants, does not look any different. However, functionally it is a different manner. These are things I have found MEN just do not want to talk about but need to. ONLY when I use the injections, do I achieve an erection that is "functional" to copulate. I tried the pump routine and it was very painful and took away from the erotic sensation. Cialus/Viagra only intensified my orgasm, but did not achieve erections. When I talk to the doctor about a penial implant, he said, my cock will shrink more. JEESSUS, but yet a smaller cock? I do not think so. In addition the doctor said, "There is a possibility you can lose erotic feeling sensation with the penial Implant". Not acceptable.... I work out at the gym 3x a week and maintain a rigorous work out weight lifting program. Still, even though I keep in good shape, dating has been not rewarding. It has been My experience a MAN with a non functional member has limited dating possibilities. I have not had sex in over 5 years. The social isolation is very depressing. The question I have is "Where does this leave me?" I have deep intense orgasms, like men usually do but they are dry and I do not shoot any sperm. This lack of "finishing" the job, also leaves me with a feeling of loss.

    I am curious as to what other men feel and experience regarding the actual feeling of the sexual act and or getting male sexual satisfaction.

  • Thanks flor your reply.

    Last week I had my catheter removed 15/3/17. It's only been 3/4 days which I know is early days. But I'm concerned about the leakage I'm experiencing. At the hospital on the day of having it removed they placed a pad on me & said try & drink some water & see if you have any feeling of wanting to go for a wee.The nurse who was appointed to me said they she would keep popping back inthey said they were very pleased with the progress that I'd made, as I had manage to drink 2 jugs of water in a time of say 3hours & managed to walk to the toilet & do a wee.

  • Sorry I pressed the submit button by mistake cause I hadt finish. Well I went to the loo 3/4 times, it felt very different to pre surgery. There was leakage in the pad, but the nurse said that I was doing extremely well as I was still only using the one pad for about 4 hours, she said this was very encouraging,because at this stage she said a lot of people would of been through 3/4 pads within that time. So she did a bladder scan on me & was quite happy with that & said I could go home. Well that was about 4 days ago, I'm getting a different type of feeling of going to the loo, that seems to of changed. I'm putting a pad on in the morning & then changing it to another one when I go to bed, I'm waking up in the night I check my pad and I can see it's wet. I'm finding all this very difficult at the moment, I don't feel that I'm making progress, can any one give opinions?

    At the hospital the nurse gave me a leaflet regarding pelvic floor excise which I have been trying to do, can anyone give advice regarding this.

    Many thanks. Mike

  • Vitruviusman, Lucky for me, my wife stuck with me all through this PC saga. I would not want to be in your shoes. I think you are doing all the right things healthwise for yourself. I realize it is a lonely existence and have no idea how to change that. As for the orgasms and their intensity, I have hit the highest of highs and the lowest of lows. As for the "money shot", that one is for the memory books. It is best to not focus on that loss too much. The best orgasms I have ever had were with the Viberect. For a $300 machine, it is a poor design that does not have a replaceable rechargeable battery. Once you clamped that baby on your prick, it was off to the moon baby! Like anything else, the law of diminishing returns kicks in. The more you use it, the less intense the orgasm or no orgasm at all. It became such a mind game. Orgasms are a product of the mind as well as the prick. I know this because prior to surgery, doubt raised its ugly head. Up until that point, I could count on my prick to deliver an orgasm 100% of the time. I hit my 50's and that all changed. I would be pounding away happily, and then this little thought would enter my head, "It is not going to happen this time is it?" Aww, shit! Shrink, shrink, shrink. The kicker is, that the more that happens, the more it happens until success is definitely in the minority. Post surgery, that is all in the past. The mind is such an amazing thing. It can dream up the most amazing orgasms and it can defeat them as well. It is all up to you.

  • Thanks . Mike

  • Dheberling, thank you for a most welcomed candid explanation. The Cialus gives me deep intense orgasms but soft cock.. NOT COOL when you need to complete the job....

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