15 months post robotic prostatectomy and no erections

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mllc16
mllc16 Member Posts: 6 Member
edited June 25 in Prostate Cancer #1

Hi, just looking for a bit of encouragement and to see how others may have done when erections post prostatectomy continue to be absent. I had surgery 15 months ago and my surgeon expected all nerves had been spared. I have been using a pump daily and did regiments of first tadalafil and then sildenafil. Both were maximum does and neither did anything for me other than make me feel awful. My care team then prescribed TriMix. I am at 60-70 units and while it does result in engorgement it requires me to stay standing or wear a ring if I hope to have intercourse. It also is a bit like having a floppy. Penetration is achievable but it is almost like my penis base is on a swivel.

I am hopeful that some normalcy will return but it is hard to stay positive. For those with similar experiences, how long was it before some sense of normalcy returned? For those that have used injections, has it become a forever thing or were you able to wean away from it?

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  • Clevelandguy
    Clevelandguy Member Posts: 1,086 Member
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    Hi,

    It took me about two years after surgery to get a usable member, I would say I am about 80% of what I was before surgery. I tried sildenafil after surgery but it did not seem to help. I would think you should be seeing some progress at 15 months but no one heals at the same rate. Keep the stimulation going by any means possible, hopefully that will help.

    Dave 3+4

  • mllc16
    mllc16 Member Posts: 6 Member
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    Thank you for the encouragement. I did expect everything would take a while but had hoped for better progression. When I first contemplated surgery I kept hearing 6-9 months to start getting erections. This then stretched to up to a year and now mirrors your experience at two years. I will stick at it. Thankfully my wife is more than willing to try new things and adapt to what we have.

  • lesjanes
    lesjanes Member Posts: 26 Member
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    Sorry to hear your recovery is taking so long. I am scheduled for surgery on 7/11 .

    It may be helpful for others to know more about your health prior to surgery….i;e height, weight, age, any heart or artery issues, any diabetes, and of course your reason for surgery (gleason score, # of postive biopsy samples, was the PC contained ot not)

    Best of luck, you are on the right forum for good advice and support.

  • mllc16
    mllc16 Member Posts: 6 Member
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    I am happy to share my background and wish you well for your upcoming surgery.

    I was 62 and in good health when I was diagnosed. I do carry more weight than I should but am not significantly overweight (10-15# on a 5'-10" frame). My only ongoing medical issue is that I was diagnosed with Graves (thyroid) disease in my early 30s and after treatment have been on daily levothyroxine ever since. No use of tobacco and low alcohol and caffeine consumption. Sex life before surgery was 2-4 times a week with no need for medical or chemical assistance.

    I was initially evaluated for prostate cancer because I had increasing PSA levels year over year and a family history of prostate cancer with my father and a brother. I typically had PSA levels of 0.5-0.7 ng/mL but this increased to 2.2 ng/mL between 2019 and 2021. Way below threshold but my care providers were concerned about the rate of rise. A year later it was 3.31 ng/mL, three months after that it was at 3.8 ng/mL and nine months later, just before surgery, 5.1 ng/mL. When my PSA hit 3.8 ng/mL I was scheduled to meet with a urologist to do additional testing and biopsies.

    Twelve needle biopsies were completed with four of the biopsies, two on each side of the prostate, showing cancer. Gleason scores came back as 3+3, 3+3, 4+4 and 4+4. An MRI was completed and identified a 14 x 12 x 9 mm lesion with a PI RADS of 5 but no apparent spread beyond the prostate. A PET CT was completed with a SUV max 34.47 and again no indication of spread beyond the prostate.

    Looking at my options I was very reluctant about proceeding until I had a Decipher test completed. It came back with a score of 0.89 out of 1. With testing indicating high risk and the likelihood for spread beyond the prostate I chose to undergo a Robotic Radical Prostatectomy rather than other less direct methods of treatment.

    Surgery was uneventful and I was up walking within a couple of hours and released the next morning. Pathology identified Extraprostatic Extension of the tumor but the margins, lymph nodes and bladder were clear. My surgeon indicated that nerves were not impacted by the surgery. Post surgery PSA levels remain undetectable.

    Recovery, for the most part, was not terrible and most of my incontinence was gone in 4 months. I will still have a bit of leakage if I am doing something strenuous but all is very livable. Impotence has really been my biggest thing to get through. PED5 Inhibitors really made me feel awful and I stopped using them after consulting with my care team. I use a VED daily and can kind of create a short term erection using it along with constriction rings. Trimix also kind of works but is again short lived and not a terribly good erection. As frustrating as that sometimes feels and sounds, the plus side is that my wife is fully supportive and we are learning new ways to connect.

    Please do not let any of this dissuade you from decisions you and your care team have decided is the best for you. As pointed out by others, everyone heals at a different rate. Try and stay positive, look for good things each day and talk to anyone and everyone. Best of luck, I am sure you will do fine.

  • lesjanes
    lesjanes Member Posts: 26 Member
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    Thanks for your candor and detailed response. 2-4 times a week prior to surgery? I envy you. But is so good that you have a supportive wife.

    For me out of 14 needle biopsies only 1 came back positive 3+4 and appears contained.

    Dissappointed for you that your Dr felt the nerves were not impacted. I hope I have a better near team result. But really….I don't want cancer. Everything else is secondary.

    Oh, I am 68, 5 foot 11, 190 lbs. No underlining health issues. sex 2-4 times a month without vitamin V. And I a good with that and also have an understanding partner.

    Thanks again