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My first RP anniversary

MK1965
Posts: 174
Joined: Jun 2016

While my first post RP anniversary is here (November 2,2016) I want to write about  my experience and take hindsight to reflect my recover. Just to mention; 51 y/o man very healthy  not on any medication, non smoker, non drinker, not overweight, regularly excercising, had some some LUTS with bladder neck obstruction which caused AUR. In June of 2016 elected to have TURP done to elevate my obstructing simptoms and on June 9, 2016 got news from my urologist about my post TURP pathology report which was shocker for my wife and I. I was incidentally diagnosed with prostate Ca Gleson 6. Biopsy in Auguse confirmed Ca but with higher Gleson 4+3 in 1 of 12 cores 10%. Had very hard time to make decision and primarily wanted toavoid surgery Because of SE.  My wife who happened to be an RN working in urology department at teaching hospital wanted me so badly to go with surgery as best option for my age according to her experience with patients in her department and what she knew about their recovery and progres. 

Somehow, decided to go with surgery and scheduled it for November 2, 2016. 

Pathology report post op was  downgraded to 3+4 with Ca present bilateralply and multi focal pT2c.

Surgical recovery was not so easy compared to many others experience but I made it thru. My catheter was removed on Nov10th.

Recovery of continence mostly happened in weeks 11 and 12 and by the end of 3 months I was 98-99% continent.

Now, 12 months post op I still have stress incontinece but about 99% dry. My first run without pad was Septimber 17. When active, I still leak more then I would feel comfortable but I will take it. 

My post op PSA at 6 weeks, 5, 8 and 11 months was <0.1 or<0.01 depends on essey. Thanks to God for that.

Now, the worst part of my recover. I am still 100% impotent with total ED despite aggressive rehabilitation.

Still, no slightest sign from my penis, in deep coma. At 10 weeks started Cialis daily 10 mg with once a week full dose 20 mg which up to now did not produce any results. I tried Viagra which also did not produce result. On April 19; started TRIMIX with some success 7/10.

Since I had significant loss of lenght of 2+ inches which I did not recover a bit from that loss, my erections with TRIMIX are so pathetically   small that my penis looks like when I was 10 yers old. It is not usable for sex unles I just stick it and that’s it. Any movement with trusting, it falls out which is frustrating for both of us. Tried sex three times without any succes. 

Also, my orgasams are non existent regardless how much stimulation my wife and myself trying to bring me to the point of inevitable.

i am also using VED to recover loss of length but so far no success in that. Neither, I can achieve erecti with VED suitable for sex.

If I count now as 2 out of 3 ( cancer control and continence) as a successful, I am only 66.67% recovered which is not near normal recovery for patients my age with no other comorbid conditions.

How do I feel about it. Honestly, not so good. At 52 living sexless life with no good future unless I recover some of the length that RP robbed me of, I run out of options. On my last visit to urologist that I am doing my follow ups, he said that I just was unlucky one and that it happens more often then any urologist would ever tell prospective surgical candidate. He did not perform my RP.

I still hope for improvement to start one day which might come out from nowhere. 

My Hamlet’s dilemma is to continme or not with penile rehabilitation. If it did not produce results for 12 months at least something that started moving from ground zero, is it just futile effort?

MK

 

 

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

You have my deepest sympathy.

I have been upbraided on this forum for being so strident in my opposition to RP as a form of treatment for prostate cancer when other less risky and potentially harmful procedures like CK and IMRT are available.

Your experience is an example of why I insist that RP is an unnecessarily primitive procedure that should be avoided at all costs.  As your consulting urologist told you (too late), your experience is NOT uncommon and is something that urologists seldom warn prospective RP patients.

I of couse wish you the best of luck in surviving the cancer but, as you know, many men require follow up radiation as well as hormone therapy after the recurrence of cancer following RP.  For some reason, the need for such followup treatment is less commonly reported when the cncer is treated w/radiation from the outset.

Hopefully, newbies here who read your story will take notice and learn from your exerience. 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

Mk,

What I found most intruging is the commentary you wrote in this new thread regarding your wife.  You may have mentioned her before, but I missed it.   A urological RN in a teaching hospital.  And her view was that RP was absolutely best for a man with your particulars.  It seems her information is quite different from what you mentioned from the other urologist whom you visited.

Like Grinder (who I believe once mentioned he had been a medical student), part of my choice for RP was urinary stricture long before a cancer diagnosis, attributed for years to BEP.   Radiation often worsens stricture, which was one of the primary reasons I avoided it, and not wanting the radiation generally.   I now have better urinary control than I had for at least 5 years prior to the surgery.  I give thanks and know I was lucky. And also like Grinder, I had had Prostatitis for years, frequently bad enough to cause bleeding.  Many cases of Prostatitis are non-bacterial, and have no good form of treatment.  Obviously, I have not had it since RP.   Surgery for any reason may seem a bit barbaric to some (it seems that way to me), but I don't see how it is more barbaric than radiation. 

My mother used to drive an uncle to radiation treatments in the late 1970s for esophageal cancer.  When she got home, she always rolled the car windows down. I asked why, and she said that uncle C  "smelled like smoked meat" after treatments.   Of course radiation is 1,000 times more precise today than then, but electromagnetic radiation is never per se "healthy."  Many men intuitively see this, which may be why surgery continues to be so popular.

Ultimately, cancer sucks, and there are no effect-less ways to eradicate it.  Many cancers require serious chemotherapy, with no surgical or radiation options.  Talk about hell, there it is, and with profound side-effects, often for life.   But many cancers do not have the multitude of choices that PC a usually affords.

Some offer hope, saying potency can return even years later. That is true, but I  myself doubt it.  Your absolute lifelessness in "the region" a year out most reasonably is read as that you are way over on the potency poor recovery end of the spectrum of all men post RP.   

My own friend, a radiation oncologst who discussed my case before I was more convinced by a surgeon, told me that logically, a man with PCa must priortize three things, and in this order:  1. Curing the cancer; 2. Continence; and 3. Potency.   You are near 70%.  Maybe it will get better.

But I would rather read about troubles like yours than about men who have been shipped to hospice, and have a week of life remaining.  I pray you work out of this disappointment at some point by some means during your young life.  Certainly, regretting a choice you made after substaintal research and study will not help.  The Shakesphere is a good start,

max

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi MK,

Just a note of encouragment, You should have healing well into your second year.  Maybe your ED will get better,a t least the cancer is gone(hopefully).  Most(yes most Swingshift) do have better results than you did, it all depends on the surgery and how much of your surrounding tissue they had to remove.  After two years my drip is very minimal(like yours) and my ED is gone.  I don't really notice if my member is that much shorter, I never measured it before. 

RP is not a primative procedure but a recongnized solution to PCa if it's entirely within the gland.  My urologist and the research I did before I had my RP told me exactly what the risks were but in my case I still felt I made the right decision.  I did not want the cancer in my body any longer than necessary so it had the least opportunity to spread.  CK and other radiation treatments cause a slow death(months to years) of the prostate tissue and just like RP the results can vary from no side effects to big side effects.  Treatment is a choice that each person must make and live with the results good or bad.  I would consider it this way, hopefully you will stay cancer free and live a long healthy life.  Sex is great but after the years go by I feel it becomes less important and your good health takes the lead.  If someone ask me great sex with a risk of cancer or no sex with no risk of cancer I would take the latter every time.  Count your blessing MK, smell the air, hear the birds sing, and realize that hopefully you will live a long life without cancer.  Positive attitude is everything, don't let Swingshift drag you down into despair.

Dave 3+4 

 

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

MK

Babe Ruth's batting average was in the 300's....yours is .667.

As a 74 year old who has studied and frequently discussed this issue with others.....I would rather be continent even if I had to  suffer from ED. You can live your life.

The jury is still out as far as ED.....by the way there are doctors who are experts and specialize in sex therapy....there is one at memorial sloan kettering , john mulhall who wrote a book about this, that you may wish to obtain. Below is a presentation that I googled.

https://www.mskcc.org/blog/urologist-john-mulhall-explains-strategies-addressing-sexual-health-concerns-men

 

There are also other MD's who specialize in different parts of the country.......you may wish to schedule an appointment with one of these doctors

 

At this point let me also mention that there are sex phychologists that can give valuable input...at some point, you may wish to seek and schedule an appointment.

.........................

There has been some discussion at this thread about discussion about active treatment choice.........I am deciding to not enter this discussion now....but, I would like to say that whatever active treatment one has, he should not have second thoughts about the decision, and needs to move on.

Best

 

Grinder
Posts: 438
Joined: Mar 2017

Anyone else reading this should be aware there are different procedures available for widely differing situations. In my case, RP killed three birds with one stone, severe BPH, prostatitis from recurring Staph infection, and Gleason 6 3+3 PC.

I was afraid NOT to get the procedure done, as I had been in and out of the ER getting Foley catheters installed, getting infected catheters removed, getting them installed again. A daily regimen of Cialis and Flomax to barely keep the plumbing working because of the BPH, only to have the prostatitis flared up and shut everything down again. Tried a few times to self catheterize... If you have ever had prostatitis with an accompanying UTI that leaves your urethra inflamed and tried to self catheterize... Well, sex is the LAST thing on your mind. Just try to envision what that was like. I spent 2015 and 2016 going back and forth like this. One time the inflammation was so bad and the prostate so enlarged they could not get the Foley inserted. One male and two female nurses were trying desperately while I was a naked bloody mess on the table. Yeah, those days were not much fun. And there ain't much sex going on with a Foley catheter sticking out of your business. My prostate was finally down to 197cc during RP according to the postop report. The infection had subsided long enough with antibiotics to shrink the prostate and allow removal by RP. A normal prostate is only 25cc in weight.

So no, RP is NOT a primitive procedure that "should be avoided at all costs". It is another tool in the toolbox of treatments that should be considered and matched to each person's particular situation.

Grinder
Posts: 438
Joined: Mar 2017

I called my massive prostate "Godzilla" . I now call my business tool "Stubby" because it is so much shorter, but still stands at attention now. I did use a vacuum pump for a long while... Not to get erections, but to get blood flow into the corpus cavernosum, which helps it eventually heal up nerve endings to eventually get erections. It's been a year and a half and it finally is a stiffie like I used to get... But stubby. 

Nonetheless, I am grateful to God for every day that I wake up without a catheter sticking out of my business attached to a bed bag, needing to be emptied and sterilized before I attach It to the leg bag, so the leg bag can jerk and pull on my business every time a take a step. 

It is true that no one talks about the shortened length from RP. It should be required instruction.

Grinder
Posts: 438
Joined: Mar 2017

Experimental Psychology was my field of study as an undergrad when I and my Med School roommate were offered internships at the Psychiatric Research Institute in Indianapolis. Hence the story about both of us operating on rat brains to put the brains in centrifuges and liquify them to measure levels of serotonin. He went on to become a GP. I went on to hitchhike across the United States and had many interesting experiences, but it cost me graduate school time and I ended up in the saw and tool business because of my short sighted planning and the siren song of adventure. At least my kids learned from my foolish short sight, and all are firmly established in worthwhile professions. Not that saw and tool business is not worthwhile, but I wasted my opportunities.

Other than that, my experience is very similar to Max's just as he described it. Except what he terms "stricture" my urologist termed "retention". Probably stricture is a more accurate term for that miserable and dangerous condition. Anyone who has been through severe stricture know it is no fun at all. I welcomed RP and could care less about the other procedures from my POV.

MK1965
Posts: 174
Joined: Jun 2016

I also had some experience with self catheterization for 2 months (April & May 2016) after AUR on April 3, 2016 when I ended in ER.

Neither it was fun nor extremely terrible to do it. 

I wouldnt mind doing it for exchange of being potent when needed without taking Cialis, Viagra, TRIMIX then waiting happiness to happen. And when it does not happen, then I feel like hit by 18wheeler.

MK

Grinder
Posts: 438
Joined: Mar 2017

I probably should mention, though it's off the subject, that I was doing a lot of drugs in college, and smoking a lot of weed. That is why when someone says "cannabis oil" or the like, the alarms go off in my head, because that contributed to the squander of my time. It is not harmless as everyone wants to convince themselves.

Also, I am glad self catheterization was not terrible for you. Because in my instances, with a staph infected prostate inflated to a massive size and inflamed urethra, it was like sticking a hot poker through your urethra and pushing it hard enough to squeeze past the uber large prostate. Hence the bleeding when finally push passed the area of the urethra surrounded by the prostate. Hence the results when the nurses failed to push in a Foley as well. I did not say "bloody" as in a British expression like "I had a bloody good time of it". I meant bloody as in blood was everywhere, on them, all over the hospital bed, and a nice pool of it on my naked abdomen. Even my wife, who was there just watching it, would have described it as extremely terrible to watch.

MK1965
Posts: 174
Joined: Jun 2016

Grinder,

i don’t mind your bad response about my recoverly, keep blaming me for whatever you want. 

I would really want to sit with you in person and have coke  and coffee together ( sorry, I am non drinker). I am not mad person. I am totally opposite from what you are thinking. And I think,  we have many things in common. You started Medical school which was not ment for you. That is good thing. I am sure, you are better with what your doing then ever you would be as a MD.

i am also healthcare Professional but with difference, I completed my studies and spent all my life working in healthcare industry.

I totaly understand your suffering with MRSA and I have full empathy for that. I know how hard is to treat methicillin resistant staphylococcus aureus and how hard could be to tolerate antibiotic intolerance and side effects.

In my post prostatectomy time, I am just wondering why my experience is so extremely different. No one has explanation.

In comparison, what you mention you did in the past, I was total opposite. Lived all my life like like book example and still doing the same. Just to mention, yesterda, I officiated 4 games, run 10.58 miles and was on my feet from 9 am. Did not sit until 3:55pm when I entered into my car to drive home. I don’t think that many people of my age are able to do that. Yes,I had pad in my compression shorts.

As you can see, I am not just couch potato, sitting at home and writing my complaints to irritate you and other pro surgery fellas who can not stand and apprehended anything worse then what they experienced.

I went into surgery 99.99% potent and came out as 100% impotent regardless what I did and still doing.

My libido is still like it was before surgery with only difference in non working and non existing tool.

Grinder, i forgive you, because of your THC fog.

MK 

 

 

LifePart2
Posts: 3
Joined: Feb 2018

Hey MK,  I understand the regret, although not the same way as you.  No nocturnal erections happened for me until the 1 year mark (I am at 1.5 years post-op), after 5mg Tadalafil per day, and a 3 month stint with the injections (thats another story).  I would say I am half way to ED recovery  and I have no idea if the progress will continue, or what my capability will be in 6 or 12 months if I stop the Tadalafil.  This may be it, and if I stopped now, I would go down to almost zero (tried it).  There's not a day that I don't regret my decision...SORT OF.  I'll always wonder if proton radiation wouldn't have been better, but at the end of the day what influenced me most was to have the highest chance for a cancer cure + not having to have years of follow up.  I was also influenced by the women around me, (ex-wife, girlfriend and sister).  They all were for the RP.

It's true, I think the medical community exgaggerate the stats on ED recovery, and omit info about size, and they over-simplify the post-op therapy.  Maybe that's for our own good, so that we do rid ourselves of the disease, who knows.

I'm 57.  No matter what, I guess if I make it into my 80s with good health, I'll look back and say "good decision".

MK1965
Posts: 174
Joined: Jun 2016

Thanks LifePart2.

I am glad you are on your way of recovery. Keep going forward for whatever it takes, dont quit!

At my 14 months post op visit with my urologist, at first he could not believe when I said I feel I just woke up from surgery. He questionably noted: Really, still nothing spontaneous? We talked about how I feel and asked multiple questions.

He mentioned to me how it sound I have hypogonadism. He ordered few Testosterone related tests. Few days later he called and said that my TT is very low 217 (280-1080) And other tests were at low side. He started me on Clomiphene 50 mg EOD on January 13. 

I do not want to be to excited about it but I think I felt a bit better, less tired and just few days ago I felt first sign from my penis,  very small sign which woke up optimism in me.

i hope it will continue.

MK 

 

Grinder
Posts: 438
Joined: Mar 2017

You may think ED is worse than chronic prostatitis. Trust me, it is NOT! Because when you have an attack of prostatitis, you won't be having sex anyway. And even if you could, you would be too ill to have it. The older I got the more frequent the attacks occurred until RP was the only way to get ANY quality of life back and not live with a Foley catheter dangling from my business ad infinitum. And tell me how you have sex with a Foley installed. I have not had sex with my loving wife for several years now, yet there is the chance of it in the near future, possibly but not for sure, yet I am grateful to God and to medical advancements that made Robotic Radical Prostatectomy possible. Without it, I would always be wondering, will I wake up tomorrow on another trip to the ER to have a Foley installed because I haven't urinated in the past 24 hours and my bladder feels like it is ready to explode? Well, that can't be good.

Grinder
Posts: 438
Joined: Mar 2017

I may get censored for this, but I am going to say what everyone is afraid to say. Your frustrated expectations are only going to create stress, and I don't need a PhD in the Psychology of Human Sexual Behavior to say that stress will never help anything, much less getting an erection.

You need to take a chill pill, relax, and realize that maybe it will come back, maybe it won't, and accept that, because if you stress out every time worried to death you won't get an erection, you sure will not. Try relaxation exercises. Praying. Anything to relieve stress that is in between the lines of your post. I didn't list some of the misery I went through just to have a "most miserable" contest. I did it so you would realize there are much much worse things in life than ED. One way you can start is by thanking your wife for arranging the RP, because it's obvious she really cares about you and if you are like me you are very lucky to have her. My wife is a career math teacher, and she way out of my league, I am very lucky to have her.

Go ahead and be mad that I said this and protest. I get that. I would be mad at me for saying it too. But it's true. Your attitude is working against you in any attempt at recovery, even if recovery is possible, and it may not be, and you have to accept that.

I will now punch myself in the face as a favor to you since I know you probably want to do that.

Ouch!

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

I am glad to hear about your great survival stats, looks like you are cured, which is the primary goal. Sorry about your ED.  I am facing the decision to treat and take comfort from your post even with the ED because survival and continence are my primary concern.  There are many ways to be intimate.  As to judging one's treatment, IMHO people on these forums should only share about their personal experience and not tell others what to do.  Regret is a bad hombre, stay in the moment and celebrate because it looks like you are winning!  Denis

Grinder
Posts: 438
Joined: Mar 2017

You mention there is no response at all down there. Just asking if testosterone levels have anything to do with that. I can predict my own levels fairly accurately by my sexual inclinations and the activity level "down there" . Men also have a hormone secreted by the pituitary gland that shuts down their sex drive and shuts down testosterone production called "prolactin". It is the same hormone that stimulates lactose production in females. After sex, a man's pituitary secretes that hormone for some weird reason, hence the braggadocio of men who can perform several times consecutively simply have heightened testosterone levels and/or lower prolactin production after sex. I myself must have heightened prolactin levels because all I want to do is roll over and go to sleep afterward.

Did I mention that I have not had sex with my significant other for years now or anyone else because of my pre-op condition? So yes, I speak from personal experience of the disappointment of being unable to perform, not knowing if that was the end of sexuality for me. Not only did my condition inhibit sexual activity, but I was afraid that the staphylococcus infection could be spread like an STD. With mersa being nearly an epidemic, I did not even want to risk a condom. The only way to be rid of the prostate infection that proved resistant to total eradication by antibiotics and nip the PC in the bud was RP. So yes I speak from experience. Again, I take no pleasure in this discussion, this is not a contest, but I feel terrible for someone who is going through what I went through, any advice I can give even if rejected and scorned, I will still ask and enquire.

Grinder
Posts: 438
Joined: Mar 2017

One of the worst parts was wondering if my wife ever discussed my inability to perform with her friends, and the feeling that I was "branded" whenever I was around them. I knew she would never do that, but I still felt it anyway.

That's why I am glad this is anonymous forum. I don't want to meet you guys after what I have said in here. You're all great... But I still don't want to meet you in real life because I like being able to shut my tablet off and completely disregard anything I may have said that would embarrass the crap out of me in real life. And so I am encouraging MK and everybody to go ahead and say what is on your mind because I will too, and we don't have to worry about repercussions in real life. 

That's why I joined this forum instead of a local support group. Discuss these issues with guys in person that know who I am and talk to their wives and friends about me? Uh, no thank you.

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

Grinder

Please be informed that many men experience ED. This is more common that you think, due to age and negativity of  active treatments. I attend local support groups where ED and treatment resources are  discussed freely by presenters and others. It really is bot a big deal at the meetings.

As you might imagine there are many advantages to local support groups to include but not limited to a medical profession at the meeting; knowledge by various presenters, etc etc.

USTOO.com sponsors to local support groups worldwide. Google them for your area.

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