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Question for prostate surgery recipients

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Is there any pc surgery survivor who has an erection as good as pre-surgery? Or in other words, a sex life as good? As a survivor with a diminished erection, I have heard many others say there's is half as good, or 3/4, etc. Can anyone truly say its as good as before surgery???
George

lshick's picture
lshick
Posts: 63
Joined: Apr 2009

I'll put up my hand. Yeah, as good.

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

You are fortunate Ishisk...anybody else???

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

My surgery was May 1, 2009. Nothing yet, I had one that was, maybe half??

Jim (shubbysr)

jnetc
Posts: 19
Joined: Jul 2009

Nerves were not spared in our case.. Using the Trimix injections for Therapy two to three times a week as assigned by Doctor.. Is back to where we were before surgery..

acslife
Posts: 12
Joined: Dec 2008

After two years, I have decided to live with about 75% sensation with generally firm erections and that is without Levitra, Viagra or Cialis. Give it time and follow your doctor's advice. Everyone is different it seems. I did the medications for about a year and decided to discontinue them.

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Hand is up here! My erections are certainly as good as prior to surgery. However, I do notice a dimishing of length as I age. I am now 66 1/2.

The sensation of ejaculation is just as spectactular.

Roger

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Thanks to all for your candid replys.

Roger...how long did it take to regain your pre-op function?

George

ismetals's picture
ismetals
Posts: 70
Joined: Feb 2009

It's been 7 months or so and things seem to be improving. Now the wife is having issues (minor) but the therapy sessions have been put on hold. I'm shure that with more effort things will get back to normal. ? Did we really have a normal sex life before? None of us are envious of guys like Roger. It's the success stories that keep us all working towards full recoveries.

virginian08
Posts: 8
Joined: Jul 2009

No erectile function in my case. I would like you to understand that it is not as important as it seems at your stage. Life is important.

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

I'm in accord with you Virginian, Life is sweet...only sweeter w/o ED...

graham791
Posts: 1
Joined: Jul 2009

I had an operation for PC 3 years ago when I was 62 and enjoyed a good sex life.Followed by radiotherapy. I now feel ok physically ,but am left impotent with no hope of a proper sex life.Am not feeling good to put it moderately.

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

It is a drag not having a satisfying sex life anymore...but I have other things where I find bliss...music,food,drink,my grandkids,travel...and a good memory of all the great sex I had in the past.

dopplerjockey's picture
dopplerjockey
Posts: 39
Joined: Jul 2009

My surgery was on May 05, 2009, and apparently the nerves bilaterally were sparred. But, so far, even with nightly half doses of Cialis/Levitra, I do not develop nocturnal erections, as was the purpose of taking the nightly medications. And of course, no daytime erections at all. My urologist told me pre-operatively, that I might not recover erctile function, as I was dealing with some mild-moderate ED before the diagnosis of PC. But, I use the vacuum pump daily, and have tried the pump with restrictor bands, but even though that device will create what appears to be a functional erection, we have discovered that it is not, and that is most frustrating for me and my wife. In addition, the restrictor bands are painful when even attempting intercourse. So.....guess, I need to be patient and give it more time, but it is difficult to be optomistic at this juncture of my recovery. I'm not sure that I have found the sweetness of life that some of you discuss here having the knowledge that the surgery "might" have been a cure. We shall see.....!

ismetals's picture
ismetals
Posts: 70
Joined: Feb 2009

It's been ten months for me now and things are finally starting to work. The pump works but is just plain not fun to use. The pills are working and I don't have any side effects from them. I'm getting closer to a natural erection and will keep up with efforts in all these areas. I did have a great sex life before and am convinced I will again. I only had one nerve bundle spared so for you with two and patience I'm shure things will improve.

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

I agree, it is been almost 3 months for me. So far, my wife is being patient. We had a fantastic sex life pre surgery (sweetness of life).
Not much success yet, I know we are told it takes time, remember when your parents told you "wait till your older . . "

Jim (shubbysr)

Peter51's picture
Peter51
Posts: 29
Joined: Nov 2004

I had nerve sparing radical prostectemy in October 2004. I had just turned 50. I had great erections prior to surgery. It was six months before there was even a tingling down there. Almost a year before I had a respectable erection so we are not all the same. I suggest patience. It is somewhere between half and 3/4 of the pre surgery size. Rather an embarrasement but my girlfriend thinks I'm wonderful. I also suggest the 1/4 dose of Viagra every 48 hours. Another thing, I have a mild case of peyrennnes (SP?) disease as a result of the surgery. I remember reading that a high percentage of RP patients get this as a result of the surgery. Another surprise I was not warned about. It was several years before a doctor specializing in ED told me I had a lot of scar tissue and that I needed 1600 units of vitamin E to help work on the scar tissue. I did that for about nine months and frankly didn't see a difference.

I can have erections without Viagra but sometimes go limp in five minutes or so. Viagra has been the only thing that can give me a lasting erection. It seems to take a long time to kick in. Even though I was told an hour before, it works best for me about six hours before and still seems to wors 18 to 24 hours later. A specialist in this area at a men's clinic in Boston told me I need to plan way ahead. It was frustrating because no one told me this early on. I simply thought Viagra just didn't work well for me. I dont have near the ejaculation sensation as prior. I don't mean to sound so negative I am truly ecstatic that five years out my PSA is still undetectable. It was 13.6 at the time of my surgery. Gleason 7.

May 2009 is quite recent. Be patient. Your wife's cooperation in experimenting is also needed. Keep working on it and good luck with not only this horrible side effect of the surgery but the ultimate conquest of your cancer.

Peter

NM
Posts: 214
Joined: Jul 2009

Thank you for your comments, I have yet to have any surgery and am leaning heavily towards it. Its so good to hear from someone whos had surgery a while ago. I right now just want no incontinence and am not worried about the rest but maybe I should be after reading these comments.

Peter51's picture
Peter51
Posts: 29
Joined: Nov 2004

Hello NM,

Welcome to this forum. I noticed you just joined. I don't log on much anymore as my situation is stable. You are doing the right thing at this time by joining here and researching as much as you can now. Search the web. Also see several specialist for several professional opinions. Try connecting with a prostate cancer support group in your area. In the end you will make the right decision for your situation and comfort level. I am not pleased with my ED outcome but I am pleased with my cancer outcome. When I had to chose, I was led to believe the treatment with the greatest chance for survival for my stage was RP (Radical Prostectemy). In making my decision, my biggest concern was being here for my young children. I made my decision to accept certain risks in order to see my kids grow up and be able to support them in every way. Reflecting back, I made the right choice for me.

Good luck and contact me if you wish to.

Peter

dopplerjockey's picture
dopplerjockey
Posts: 39
Joined: Jul 2009

Hey, thanks for the words of encouragement. And thanks for sharing your history on this subject. Yes, being only out 3 months from surgery, I realize that I am expecting way too much. But, as you no doubt understand, it is difficult to be patient with this issue. From what I have read on the subject both in this forum and other areas, it is difficult to be optimistic, and that is where my real fear lies. Fortunately for me, my wife is wonderful and very supportive, probably realizing better than I that this will take time.

Peter51's picture
Peter51
Posts: 29
Joined: Nov 2004

You have a lot on your mind right now. It is wonderful your wife is so supportive. You are lucky for that. I missed that during that time. As far as your optimism, or lack therof, I know that every day that things don't seem to work are scary. I've read about the guys that have had erections so soon after the surgery and I am so delighted for them. I also believe that most men are in our catagory where it takes a longer time. I also think that most of us in the latter catagory DO REGAIN. Since you can't undo the surgery and you want most to be free of cancer, you need to focus every day returning to a normal, healthy and productive life that you had prior to surgery. Stay close to that great wife. She has it right and understands that time will heal.

Follow all your doctors instructions. I may be wrong about a few but I suspect that most doctors that operate on us are good souls that are bent on treating and curing us of cancer. I take my hat off to them for their devotion. I am not so sure they are as focused about our quality of life after the surgery. It is not too soon to meet with a doctor that specializes in ED. I suspect you have been prescribed the 25mg dose of Viagra every 48 hours. I wish in my case I had taken a daily high dose of vitamin E starting right after the surgery instead of two years later. The ED doctor is a good bet for you at this time. He may suggest ways to insure you heal better in this other important area.

Welcome to you too for recently joining this forum. Although I don't log on much these days, it helped me a great deal after my surgery.

Peter

TCB
Posts: 1
Joined: Aug 2019

great read/info for this newby but why so outdated?

jeffman
Posts: 25
Joined: Oct 2017

No erection does not equal no sex life. There are a boatload of alternative methods. As a boomer who came of age in the 70's I can attest to that. Even when I could get an erection I didn't always need it. After my surgery I lost the erection but orgasms were the same , but without ejaculation. Sometimes you need to adapt as opposed to give up. I'm 66 , so far cancer free after 2 years and still have a good, but different, sex life.

MK1965
Posts: 177
Joined: Jun 2016

jefman,

Iwould Be thrilled to know what you are calling sex Life without sex?

My sex life after RP is totally nonexistent.

MK

jeffman
Posts: 25
Joined: Oct 2017

To answer your question MK1965:

 

In my experience/opinion "sex life" is not solely defined/limited to penetration by an erect penis. When there's a will,there's a way. In this case more than one way.

 

 

Thanks,

Jeff

MK1965
Posts: 177
Joined: Jun 2016

Holding hands and looking at each other I will never call sex life.

Maybe, I am wrong.

MK

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Looks like we are answering a question from over 10 years ago.  Oh well, in my case, I was gutted (RARP) 3/18.  I would say the orgasms are about the same.  The erection issue is holding at around 75%.  PSA is undetecable at this time.  Logically, I think nothing is really the same.  How can it be?  The surgery removed the majority, if not all, of the critical pieces that control a normal erection and orgasm.  Just my cut on the question.

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi,

Having sex with your partner is not limited in my opinion to just penetrating.  Having sex can be just about anything else(use your imagination).  I don’t think we are talking about holding hands if you know what I mean, hint hint, wink wink without getting to graphic.

You sometimes have to use your imagination when your a wounded warrior like most of us are and be on the creative side.

Dave 3+4

mhl
Posts: 9
Joined: Jul 2019

We went to see the surgeon who does robotic surgery and he could not promise that it would be nerve sparing. While there we were offered a trial with 3 arms one had this drug  Apalutamide,second arm had this combination apalutamide plus abirateroneacetate and GnRH agonist  and 3rd arm was surgery . We were told my husband was randomized to surgery. My question is does any one know anything about these drugs are they availble on the market? I am  also  trying to find out information about proton therapy for the cancer. Does anyone know anything about proton therapy?  Can you have proton treament and still have surgery. Any informaiton would be greatly appreciated. My husband has PSA 73 without symptoms no metastasis biopsy showed 90% cancer in all nine slides and the doctor on exam was not able to feel anything so you can see my confusion

Thank you

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

mhl,

Good luck making good choices in your husband's treatment.   Surgeons will spare the erectile nerves almost always, except when there is suspicion of cancer involved with them.  Hence, they cannot promise in advance to not remove them.   In usch cases, the nerves must be cut out, as any patient would want.  Also, if a person has cancer in his erectile nerves outside the gland, then if he chooses radiation instead of surgery, that must be radiated to kill all of the disease; otherwise, the cancer is simply going to spread.  Radiating them is going to destroy those nerves as much as surgically cutting them out would. In other words, if the erectile nerves are cancerous, any successful treatment is going to almost certainly render him equally impotent thereafter.

Proton is mostly regarded as a valid option.  Some insurance carriers will not pay for it, and many cancer centers do not offer it, but more and more are beginning to do so. Proton advocates used to make outlandish claims about its success and lack of side effects, but recent stuides from the past several years are pushing back against much of that.  These studies mostly, generally, confirm the effectiveness of PT, but deny its superiority to convetional radiation techniques.

Digital Rectal Exams are of very limited use, since they only sense the lower rear half of the gland; they tell the doctor nothng about the other half.

Your husband's PSA and volumetric level of involvement highly suggests that he has involvment OUTSIDE the gland.  This is NOT definite, but highly probable.  Negative PET scans, MRIs, or bone marrow scans do NOT prove lack of escape.  But they do constitue commentary on the extent of escape; that is, they indicate that any escaped tumors are currently too small to be seen on imaging.  I hope some of this clarifies to you what the doctors are telling you.  

max

mhl
Posts: 9
Joined: Jul 2019

Thamk you so much for you response. My husband final dx prostatic adenomacarcinoma 80% of tissue and 4+3=7 gleasonStage 1 MRI and bone scan showed no metastsis with recomendation of surgery. Do you know if he tries proton radiation first can he still be a candidate for surgery. We are tryin to look at all options since there seems to be no mention of medications as part of the treatment plan.

Thank you

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

mhl,

You asked a question that has traditionally engendered a fair amount of disagreement here. The conventional wisdom is that after radiation therapy, prostatectomy is not possible.  Some guys then insist that it is.  However, almost no surgeons will remove a prostate post-radiation application.  My own surgeon, who had done well over 1,000 RPs today, advertises as a surgeon who WILL do the complex surgery after radiation, but only a handful of surgeons have this rare sub-specialization.  After radiation, the gland become fiberous and very difficult to cut.  Hence, in real life for most patients, removal following radiation is not possible, and would likely be of little benefit anyway.

Radiation to the tissue that formerly surrounded the gland after it was removed IS possible, and it fact is pretty common, especially in cases of relapse.

You mention "recommendation for surgery." Recommended by whom ?  Probably by a urologist.   I suggest you consult with a radiation oncologist also, since his or her assessment may be quite a bit different.

mhl
Posts: 9
Joined: Jul 2019

Radical prostectomy was the recommendation by urologist and the surgeon who does robotic surgery. I have not spoken with a radiation oncologist yet because initially in our relief that there was no metastsis we though surgery was our only option. As I keep reading I see that there may be other advertised options  and  I am trying to  get more information on types of radiation  tx. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

mhl,

Radiation is a common and accepted therapy for all patients, whether there is metastasis or not. As lighterwoods mentioned below, in cases where there IS metastasis, radiation in general is preferred by most medical authorities as more effective.

You mention 'types' of radiation therapy (RT).    Among the more common, established technologies (I am not getting into anything experimental or in clinical trials), absolutely the most common RT for prostate cancer (PCa) is IMRT.  This has an excellent track record, and is available EVERYWHERE.  It is considered virtually identical with surgical removal for curative effect (eradicating all of the cancer).   A very similiar but somewhat upgraded technology is IGRT, and nearly all cancer centers have this tooday also, often in the same machine they use for IMRT.

A not new, but newer technology is SBRT radiation, under the trade names of Cyberknife or Varian TrueBeam.  These also are widely available, and are equivalent in effectiveness with IMRT/IGRT, but SBRT has easier delivery: whereas IMRT usually requires around 35 visits to a radiation center of about 1 hour each, SBRT is usually completed in around five or so visits to the center.

'Seeding,' or Brachytherapy, involves inserting tiny, radioactive pellets inside the prostate gland.  This can be the easiest technique of all, but is usually not recommended for advanced or aggressive disease.

The other technique is proton therapy, which several guys have commented on.  Most writers here usually recommend that a patient meet at least one radiation oncologist before making a treatment choice.

 

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi MHL,

Have they done a biopsy yet to determine the severity of his cancer?  The biopsy will tell you how agressive the cancer is, might weigh in on your decision. If I was to do radiation I would look very closley at Proton.  The one thing I like about Proton is that it stops at the tumor and does not go past it. Other forms of radiation go completely through the body and could hit the bowel or rectum maybe causing latent damge.

Dave 3+4

mhl
Posts: 9
Joined: Jul 2019

 Thank you for your response. He had a biopsy with 80% o-90% tissue adenocaand gleason 4-3=7  MRI and body scan negative for metatsis  surgery unable to garuntee that it will be nerve sparing is the only option discussed by medical people so I really want to explore options such as proton treatment /medications /surgery

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Well, it comes down to gut (surgery) or nuke (radiation).  If the cancer has escaped the gland, most folks are advised to nuke.  If the cancer is contained to the gland, most folks are advised to gut.  In my case, I was advised to gut (gland removed; seminal vesicles removed; 8 pelvic lymph nodes removed; bladder neck reconstruction).  If your quality of life is dependent on preventing erectile dysfunction, I would probably go with the nuke.  However, in my opinion, nuke or gutting can cause erectile dysfuntion.  If your quality of life is dependent on defeating the cancer and adjusting to the side effects, then like most of us you have a tough decision to make.  Like I said, if the cancer has escaped the gland no need for surgery, just radiation.  I had my RARP 3/20/2018.  At this time, my PSA is undetecatble;  I am fully continent;  still having issues with ED.  Good luck on your journey.

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