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What are your approaches to sex and intimacy after treatment?

  • By ninaw Keymaster

    A place to talk about personal experiences with sex and intimacy. Remember – you’re welcome to discuss products, but no sales or soliciting!

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  • By DFrank

    I have had ED worsen as a result of radiation tx, but I respond well to C-ring and ED meds, which really make a big difference! C-rings are too often overlooked, and too often used improperly.

    My main frustration has been inability to reach orgasm ever since bicalutimide and Lupron tx even though I have refused these meds now for several years due to some dangerous side effects (And I have done well without them!). I’m looking for info from others who may have had similar experience, and maybe some helpful suggestions.

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    • By Richard Faust Moderator

      Hi DFrank. I’ve been looking for research of the inability to reach orgasm and the only thing I can find is in reference to the hormone treatments. Have your doctors mentioned testosterone treatments? I found this extensive pamphlet on prostate cancer and sex life out of the U.K.: https://prostatecanceruk.org/media/2491657/prostate-cancer-and-your-sex-life.pdf. Testosterone seems to be the only treatment mentioned, which, of course depends on being done cancer treatment. Hopefully others can chime in with their experiences. Best, Richard (ProstateCancer.net Team)

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    • By DFrank

      I have found some research (Hsieih et. al.) that indicate Dostinex (Cabergoline) restored orgasm in 69% of treated patients. This was not a double-blind study and was not strictly cancer patients. This, and other research points out that this problem is much more common than was believed a few years ago. Another research articles pose Oxytocin delivered nasally during intercourse as a remedy. My doctors are not very interested in either as there is minimal research on either, and none on interaction with any cancer treatments. Testosterone is not an option for me as my cancer is still active and I am still in treatment. Also, my testosterone is already high for my age! Not something my doctors are happy about.

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    • By Richard Faust Moderator

      Thanks for sharing the information DFrank, but sorry that you are still at an impasse on treatment for restored orgasm. I did find this study on Cabergoline for male orgasmic disorder: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4822480/. Very similar to the research you cited, they found 66.4% “reported subjective improvement.” This was not a randomized trial and the authors call for such future research. How is the current PCa treatment going? Best, Richard (ProstateCancer.net Team)

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    • By DFrank

      It looks like Hsieh was involved in that study, too. I’m about to have my 6th and last Xofigo infusion. (And getting my insurance to pay for it when I hadn’t “failed” on Lupron was a minor miracle!) My blood tests show that it’s working, but It is not expected to be a cure, just a way to impact cancer for months, or years if I’m really lucky. And, no side effects! Nothing! There is a list of potential issues with it but I have not had any of them. There is some temporary risk of radioactivity for others who share a bathroom, but there are easy ways to mitigate this.

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  • By Will Jones Moderator

    Nine months after surgery, I am still experiencing erectile dysfunction. My wife and I have adjusted to my condition by adding more loving touch and stimulation to our intimate moments. And we create an intimate environment to accent our intimacy. We both try to be present, not thinking about what we’re not able to do, but what we are doing. Mutual orgasm is still part of our experience because I learned that an erection is not necessary for a man to have an orgasm. Yes, our intimacy is different, but it is also satisfying.

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  • By DFrank

    Good that you can “get there”! We have tried all sorts of sensual touching and long foreplay, sometimes off and on playfully for a couple of days before we get serious, but still even though my erection is pretty reliable, my result is not. I feel excitement and feel very into it, but just can’t get to that stage of inevitability. She often has a good time and that is great as far as that goes, but my eventual frustration effects both of us. We’re still hoping for an answer.

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  • By Clark

    I am six years out with a recurrence after 5 years. So surgery, then 5 years later radiation (33 days) and Lupron (6 months). I have not really been able to get a true erection since the surgery. My wife and I have definitely figured out how to work the situation so orgasms, really good ones, happen. However, maybe 10 months or so after the radiation/hormone therapy I started having some “squirting pee” issues when getting excited. I have to say that it is not a huge amount but definitely not a wonderful thing to accompany what we are doing. Has anybody else ever experienced this? Due the timing of the onset of this particular issue, I have to think this is possibly a radiation after effect.

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    • By ninaw Keymaster

      @clark, it sounds like you’re already ahead of the curve in getting creative with your wife when it comes to intimacy. Though erections might not be possible and you’ve come to terms with that, I can see why you’d be concerned about the urinary control.

      I’ve definitely heard from others in the community, especially on Facebook, about urinary control during sex. Hopefully we’ll hear from others, and I’ll send anyone here who mentions this, but in the meantime, this article talks about @joed‘s solution using a clamp here: https://prostatecancer.net/stories/prostate-surgery-lymph-node/. Of course, there are differing opinions, and we’ve also heard it can be hard to use correctly.

      There’s also a lot of talk about Kegels as a way to help with a range of sexual and urinary problems. We’ve got several articles here: https://prostatecancer.net/?s=kegels.

      Hope this helps, and I’ll see if we can get anyone from Facebook to weigh in too! – Nina, ProstateCancer.net Team

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  • By Will Jones Moderator

    @clark, I’ve had that experience and it can be frustrating. I have to relax, re-set, try not to let the frustration ruin the moment. It helps that my wife is so understanding. As I’ve continued to heal, it has become less of a problem. One thing that helps is anticipating an intimate moment and emptying my bladder as much as possible in advance so that there’s less pressure. It’s all part of the journey, and I have to keep remembering that I no longer have cancer, or at least no recurrence at nine months post-surgery. Sorry you had to go through radiation. I hope your problem is temporary. Will Jones ProstateCancer.net Moderator

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  • By DFrank

    I have not had that particular problem, but I understand that symptoms of scaring or minor damage from radiation can be delayed by months or years. Ten months out is not an unreasonable time for a delayed reaction to appear. I am farther out from my radiation and I think I have experienced other symptoms possibly from the radiation. Yes, Kegels might be the best thing to try at this point. They have helped me and can help with a variety of issues.

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  • By kevin

    Does anyone have any info on cyber knife radiation is it better or worse???

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  • By kevin

    I am scheduled for long term radiation in July. I just heard of this Cyberknife treatment. Does any one know of any info on this ???

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  • By Eduardo1

    After 12 years, many treatment regimes, one divorce and on failed relationships, I am over three years not dating, no female companionship, no human touch, and all out of ideas. I think everyone has a different outcome and we should not generalize over optimistically. It just make those who have different experiences feel like failures when it fact it could just be what it is. More understanding for those who have nonresponsive and horrible outcomes. Stop invalidating other’s true experiences: it shows more compassion for things you may not understand. Not to mention being single at this stage is a existential puzzle.

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    • By ninaw Keymaster

      Hi Eduardo1, I think you bring up an important point. Sometimes it makes more sense to accept your current situation rather than be pressured to want something different. The whole idea of “winning” or “losing” can be really damaging when it comes to cancer and in this case side effects. It sounds like you’re focused on adjusting to what you’ve been through. Sometimes folks do want suggestions, but other times they just want to know that they’re not the only ones dealing with it. This is a good reminder that an answer or tip isn’t always what’s needed. Thanks for commenting! – Nina, ProstateCancer.net Team

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    • By Will Jones Moderator

      Hi Eduardo1, Thanks for your comments. Although my circumstance post-treatment is different than yours, I agree with your point-of-view. For me, one of the biggest challenges is not to compare my current reality with my pre-diagnosis reality or with the reality of other men my age who aren’t dealing with my post-surgery side effects. That can get me down. In the world of recovery from addiction, people talk about the concept of acceptance as a key to moving forward and enjoying life. I think that also applies to recovery from any serious illness. For me, to enjoy my life on a day-to-day basis I have to accept my circumstances to the best of my ability.

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