"Nerve-Us" About Surgery - Both Nerves to be removed and a life worth living after??

Hi Community....

my second post and I am again looking for support for my surgery scheduled in 9 days. I have 10 of 12 regions of the prostate with cancerous cells, gleason 4/3, prostate encapsulated and at stage T2c, ( tumor is in both lobes but within the prostatic capsule)....my family history has father and 3 uncles with PC. I have consulted with my urologist, 2 surgeons and a radiation oncologist...all advising treatment because of age and early detection, (I am doubting the early detection talk due to number of regions affected....)...I preferred to go the route of radiation treatment and had corresponded with the Rediation Doc who admitted that if he were in my shoes he would opt for surgery because of the possibility of recurrence and poor salvage options after recurrence....

So I found a surgeon in Colorado who has performed significant DaVinci procedures. After reviewing my results and performing another DRE....jeesh...this is not fun at this point...he assessed that it would be best to remove prostate, seminal vesicles, lymph nodes and ....gulp...both nerves....

So after a week of serious depression, I resigned myself to opting for potential longevity versus quality of life and increased risk of recurrence....

My plea for help is to illicit responses from the community who has gone through surgery where both nerves are removed....leading to 100% ED....

I would like to know anyone's experiences in this case. What is your sex life like? The information shared with me concerning penile rehab is vacuum pumps and injections about 4 - 6 weeks post surgery. But with both nerves removed is there any success with this treatment??? Are you able to achieve orgasms and is sex pleasurable for your partners and for you??

I am hoping to get some informed opinions on this matter...I do have the option of instructing the surgeon to spare one nerve bundle even though it is against his experienced opinion.

I appreciate the communities support,

Thanks very much,

Chris

22 Replies

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  • Chris, I had a failed radiation treatment in 2001 and lost all erections. Life doesn't end with out an erection. Your urologist has several tricks up his sleeve to help if you can be candid with him. My partner and I have a satisfying sex life for her, but not so much for me. The closeness and intimacy of the encounter have to suffice for me, but her orgasms are quite good for her. Get and study books for lesbian sex to learn how to satisfy her. This is better than the alternative! Good luck fellow traveler!

  • Hi Olman,

    appreciate your response....and yes...I am Happy when she is Happiest so that part of life will be good...although my concerns somewhat lie with how spontaneous the foreplay will be...."when the moment strikes..." will there be "that moment" and will there be a somewhat contrived procedure to producing my erections....(if I can produce erections)......I can take solace in the intimacy and can accept lake of orgasms for me...as long as my partner can also come together on that point...

    I guess I am forced to face up to the statistics of 5% or less of patients recovering erections after both nerve bundles removed. Some sights have encouraging stories and I will take it day by day.

    T-minus 5 days before surgery.....

    Chris

  • Chris,

    As Olman has said, life goes on after sex, but having both nerves taken still does not mean life is without sex. It does mean that sex changes, but then so does everything else in life change. In simple response to your question, Yes life is still very much worth living.

    I do not believe that with both sets of nerves neutralized you will be able to achieve an erection with drugs, but yes the pump can work. However, I do believe that your best option would be a penile implant. There are three different types of implants, so you will need to do your homework.

    I have recorded a podcast about penile implants, included in the podcast is a description of the three types available. I suggest that you download the Malecare Podcast app (for free like everything else we do) at: appsto.re/us/fHFBgb.i and listen to that podcast. Additionally, you might find the other podcasts helpful and interesting.

    Joel

  • Hi Joel,

    I will do my due diligence on implants, but honestly an hoping that injections will be effective for me. If not I appreciate you helping with the thread on types of implants available today.

    Thanks very much for your reply,

    Take care,

    Chris

  • I had an implant in Nov in Calgary canada had the Ams lgx best thing i ever had no more pills pumps am back to myself before my prostate cancer surgery

    Guys do it

  • >>>

    .he assessed that it would be best to remove prostate, seminal vesicles, lymph nodes and ....gulp...both nerves....

    >>>

    Certainly not what you wanted to hear. But, in view of 10 positive cores, out of 12, not unreasonable. You _hope_ it's organ-confined, but if it's not, the surgeon is going to cut out what he can see (or feel), and put some margin around it.

    Viagra, and other oral drugs, depend on at least some erectile nerves being intact. A VED, and injections, _do not_ depend on working erectile nerves.

    So, if you want an erection, after surgery, VED's and injections are your options. Depending on your age and love / fear of surgery, a penile implant is also possible.

    You can have a reasonable sex life without any erections. Orgasms don't require erections, or ejaculation -- and those are the two things your prostatectomy will affect. Orgasms _do_ (just about always) require intact sensory nerves from the skin of the penis, and those are usually not damaged (much) by prostatectomy. [The docs say "We don't damage them", and some men report decreased sensation, to varying degrees. Pick who you believe.]

    My wife and I spent a year in that "no-intercourse" sexuality mode, after I had surgery. Not too bad, and way better than no sex. Injections have worked well for me, for the past 8 years.

    I checked your previous thread, and I didn't give you a link to a booklist on sex and prostate cancer. Here it is:

    inspire.com/groups/us-too-p...

    Mulhall's book is a good place to start, to understand what happens after surgery, and what can be done about it.

    There's a _lot_ of discussion about sex after PCa on the Inspire / USTOO forum. There's a very wide spectrum of surgical results, and a very wide spectrum of how men (and their partners deal with them. Take a look at some of the threads in the "Prostate Cancer and Intimacy" sub-forum:

    inspire.com/groups/us-too-p...

    If you have more questions, ask.

    . Charles

  • Charles,

    thanks for your reply...a lot of valuable information to immerse in days before my procedure....and yes...you hit on some decisions my surgeon echoed...with 10/12 sites with cancer, and likelihood of cancer outside capsule my surgeon looking to remove everything....vesicles, lymph nodes and nerve bundles....

    However your information on success with injections and the injection efficacy independent of nerve bundles is encouraging, along with sensation still being communicated along remaining nerve pathways.

    I really appreciate you sharing these links as well. The more information and shared experiences with post op patients lends a much more informed person going into surgery...at least an eyes wide open, or somewhat open in my case.

    I am hopeful to recover a vibrant, intimate relationship and am grateful for the information you have provided.

    Take care,

    Chris

  • I feel your pain, man. This journey is not for the faint of heart. The overarching goal should be cured of the cancer. Everything else is gravy. We all wish it were not this way. I had surgery in 2011. It was further complicated by two previous hernia surgeries, one traditional the other laparoscopic. The traditional really messed it up down there with a lot of scar tissue. The doctor had to remove the Kevlar mesh that was installed during the last hernia surgery. That was just to get started. There was so much scar tissue on the left side he could not get to the lymph nodes on that side for fear of cutting a leg nerve. I am grateful that he got all of the cancer. I am grateful that I can still walk and run. You have to figure out what is important in life. Not every man stays a stud muffin till the day they die. Only the lucky few get to do that. If you have read any of my prior posts you will know that Mr. P was not performing to the standards I was used to by the time I got into my fifties. No man volunteers this information without trauma in their life. First of all it comes on you slowly so that you do not quite understand what is going on. By the time you are in full blown impotence it is too late to do much about it.

  • Hi DHeberling,

    I really appreciate your candor and humor. To accept and to find a way to eliminate trepidation with laughter indicts your insightful character....You have obviously found a way to find peace after your surgeries and are fortunate to be cured of PC...and that is the bottom line. And yes, as a typical Man I am letting concern over virility obscure a cure that provides longevity. I have yet to define the healthy balance to find the "right" procedure that has the best chance at curing my PC and providing the remaining optimal chance at intimacy. But as you point out, what really defines a loving relationship? There is of course much more to communicating Love between partners and having a foundation of presence in each other's lives. The path to understanding the infinite ways to speaking "the language of love" is individualized for each of us.....

    Will be hopefully adventurous in my case too....

    I really appreciate what you have shared,

    Take care,

    Chris

  • TO answer AZCANUCK'S: QUESTION 1: RADICAL SURGERY OF PROSTATE AFTER AFFECTS SOCIALLY/ROMANTICALLY IS DISASTROUS . PERIOD. As a single guy, trying to find a partner who is "understanding" is easy....Trying to get them to want a relationship with you is anew ball game.. Usual answer, no matter how nice or warm/snuggling a person is... avoidance, lack of returning phone calls, I like you but......... etc. I had the surgery in 2010. I get people hitting on me all the time because I am in good shape. But WHAT is the POINT? Once they learn of my sexual limitations, the avoidance comes and eventually you get the message, they are not interested.

    2) If your prostate cancer is totally encapsulated WHY do they have to conduct such radical surgery of the both nerves , nodes etc" ? I had only the prostate out via Divinci method. I have intense internal orgasm but no erections. I am at a lost as to why the surgeons what to excise so much tissue/surrounding tissue?

    3) How old are you? If you are 45-64 , This is considered young and your best options would be different from a senior male over 68 years old.

    4) Radiation: Did the radiologist tell you radiating the pelvic area could weaken your bones? I have a rigorous gym weight lifting program to stay in shape. The radiologist told me if we radiate the pelvic area , " You (me) stand the risk of snapping your pelvis while weight lifting, or performing leg presses" MY response, "SERIOUSLY?". I would rather have my body in shape without risk than have the radiation, possibly weakening my pelvis----worse case scenario--have the cancer come back , and have to have the surgery anyway.

    my Email if you want to take this off line: mineo.keith@gmail.com

  • Intense internal orgasm, huh?

  • Get an implant i did best move great sex on demand

  • Good advice!!

  • Chris,

    I had my RP in May 2016 so am about 7 months post-op. My prostate was huge (my doctor's words) at 95 cc but while difficult, he was able to save on set of nerves. You have not said what your prostate size is, but that may be worth exploring if you want to push for saving one set. With respect to radiation, that is an option after surgery if there is evidence of any remaining PC, but surgery is not an option after radiation so just be aware of that.

    Post-op, I haven't recovered unassisted erections at this point but, as others have said, orgasms are driven by other nerves. They are dry, can occur with a flacid penis (jacking off) but they are there, nonetheless. I'm taking a low dose of Cialis to keep penile tissues pliable and using tri-mix injections to get hard. I've also tried the vacuum pump but it doesn't enable me to hold an erection after removal long enough to do any good.

    If I were in your shoes, I think I would ask for a second opinion on the question of removal of the second set of nerves. If the cancer is seen to be close to both sets, you may not have any real choice but it would be worth having the discussion.

    Good luck!

    Ken

  • Hi Chris,

    I'm sorry to hear about your situation. I had surgery in 1996 at 45 yrs old. Dr saved one nerve. I tried cialas and injections but still didn't have much of an erection. Due to rising psa I had radiation a couple years later which damaged the remaining nerve, blood vessels and tissue in the pelvic area. If you are married or in a serious relationship I can't stress enough to try to discuss the most likely loss of erection with your partner and Dr. And I hope she is understanding. My wife was not.

    I started having more side effects from the radiation 10 years later such as bleeding from bladder due to damaged blood vessels and also from bowels. My urologist warned against having colon samples taken from the pelvic radiation area due to the possibility of severe bleeding.

    For your sake l hope surgery and radiation has improved in 20 years. I'm 66 now and enjoying my grandchildren. So I am glad I did what needed to be done.

    Best wishes, Steve

  • After surgery, the cancer sometimes "comes back". So removing the nerves does not mean you will be cured. What about telling the doctor to leave the nerves, and take a chance. Positive margins baby.

    Or get better imaging (PCMA at UCSF).

  • too late now

  • I had DaVinci in 2012. Similar to you, I had to have the nerves removed. It's now 2017 and I'm alive. From where I sit -- Success

    Sex is now limited to oral but my spouse is fine with that and enjoyed it before surgery and I believe enjoys it still. Yes I still experience the pleasure of an orgasm and while it is heightened, mine are also shorter in duration, but enjoyable none the less. Life goes on (thank goodness) just somewhat different.

  • Thank you all for sharing,

    I went in last Friday for my robotic prostatectomy. Honestly, I was not 100% behind this procedure when compared to HIFU (High Intensity focused ultrasound). I had consulted with 2 surgeons, Dr Peretsman from North Carolina and Dr Pugach from Los Angeles. Both Docs were experienced Urologists with 10+ years of HIFU treatments. Both Docs did a great job of assessing my PC and addressing HIFU based care. One Doc said with 10/12 cores cancerous then RP was the way to go, the other Doc said he would proceed with HIFU. The plus was quicker recovery, good salvage options and nerve sparing. The negatives were uncertainty at irradicating all PC within the capsule and cost, $25K. Each has to make their own decisions and we'd all like to have cost not be a factor in treatment, or access to the best available care. For me, cost was a factor but I also weighed cure, peace of mind, my RP surgeons experience and track record, even though he assessed bi-lateral nerve removal prior to the surgery.

    I went ahead with surgery Friday. I am very fortunate that I had a small, although equally loved, prostate. Also in my favor was the fact that the prostate capsule was still in tact. Part of my unease at accepting my fate was coming to understand and accept that even with routine screenings and low PSA levels my PC was relatively widespread, which in turn left me with few treatment options. The good news was the surgeon, Dr Maroni, did a real time assessment of the gland and was able to spare both nerve bundles. Heading into surgery I had prepared for not having any bundles post-op so I was incredibly fortunate at this outcome. I am in my 4th day of recovery with each day getting slightly better. Day after surgery and 3rd day after surgery were rough. The discomfort from the CO2 gas was stout, felt like heart attack symptoms and 9/10 prolonged pain. But the symptoms are gradually getting better and there's always the "Foley" to distract away from gas discomfort!

    Foley comes out Friday and 5 more weeks of recovery. There have honestly been a mixed bag of experience from the communities quality of life post treatment. I will do what I can to focus on positives and be thankful for what I have. It doesn't take much to be grateful and I am lucky to have people in my life who are looking to support.

    Thanks again to everyone who took the time to share their experiences. I apologize for not being more diligent in my responses to each and everyone.

    Appreciate this communities efforts and knowledge,

    You have helped me greatly along the way,

    Chris

  • Now comes the heavy lifting post butchery. Kegal exercises are the name of the game if you want to learn how to pee again. It took me three months to figure that out. Once I did, no more big boy diapers. One side effect of prostate removal is that I could not sit on a regular bicycle seat. It pushes on the bladder so hard, it makes you want to pee immediately after getting off the seat. With the removal of the prostate, one of the urinary sphincters goes with it. The only one left is at the base of the bladder and it is much harder to tame that beast. It became such an issue, I switched to a recumbent bicycle and have been happy ever since. You will also find out why women go to the bathroom once they stand up, like in boarding lounges at the airport. You will be fat, dumb, and happy sitting there. Then you stand up and you have to make a bee line for the bathroom because you have to pee right now! You will find yourself making preemptive pees to ward off the five alarm pee. I did not realize how good I had it until my prostate was removed. Hah! Take advantage of any bathroom that is nearby. You will sorely miss it if you pass it by. If you think I am talking a lot about peeing, you are right. Before PC, you did not have to think about it all that much. If you had to go, you went. You could hold it longer if you had to to though. Not anymore post butchery! You have to think about it strategically. You will notice that I have not said a word about sex. That is a much longer row to hoe. Who knows, maybe you will be one of the lucky ones.

  • Dear Sir, no one will tell you that this is going to be a cake walk for you..It 's probably hard to hear that you should be aware that it could be worse.I understand from my saga whats going through your mind..I wasnt a candidate for surgery.You have an advantage with surgery to get ahead of it...be grateful that it hasnt spread..Take good care of yourself and you will after all be OK ..

  • Thanks Lulu,

    have my follow-up post surgery PSA test in 2 weeks. Will see results then....your point is well taken....first health...and hopefully quality of life issues work themselves out during the added years of being cancer free...(hopefully).

    Hopefully you are able to get the upper hand with your health issues...

    Thanks for your support,

    Chris

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