timbaker Posted December 13, 2019 Share Posted December 13, 2019 My GP recently referred me to a specialist in men's sexual health to see if there was anything I could do to reverse erectile dysfunction. I was diagnosed with metastatic prostate cancer 4.5 years ago at age 50 with PSA 120 and Gleason score 9. I've done early chemo with ADT and recently switched from Zoladex (which made me almost suicidally depressed) to Xtandi (enzalutamide) which I tolerate much better. Even though my PSA has crept up a bit I am much happier, able to work and enjoy good quality of life and scans have been stable now for almost three years with just one small met on a rib bone, and one that has completely cleared from my right femur. Anyway, I was expecting the specialist to prescribe some sort of pump or implant but instead he recommended Sildenafil, suggesting I take it 3-4 times a week and attempt to get an erection through physical stimulation 90 minutes after taking it to stimulate the blood vessels. I was surprised as no other doctor had suggested it might be possible to reverse the loss of sexual function. I was also surprised when I got home and googled Sildenafil that it is also known as Viagra. He seemed quite upbeat that this would be successful - it's too early to tell but I wondered if any others had any experience with it, as I'd always been under the impression that I just had to accept my lot while on hormone therapy and sexual function would be gone for good. I'm also feeling annoyed that no doctor alerted me to the possibility that I could improve sexual function earlier as I imagine it might have been easier to reverse if I had begun this approach sooner. In every other way I remain in good health, with no symptoms or side effects. I've been surprised too that there is so little discussion of this aspect of prostate cancer treatment, as the side effects of hormone therapy have been far and away the worst part of this whole experience, affecting my marriage, my mental health and self-esteem. It seems bordering on negligent to prescribe drugs with such devastating side effects with no discussion of what might be done to mitigate these side effects. Would welcome the experiences of any other men who have tried this approach. Thanks, Tim Link to comment Share on other sites More sharing options...
Mack Posted December 13, 2019 Share Posted December 13, 2019 Hi Timbaker, I finished 8 rounds of Docetaxel 3 months ago. 'Been on ADT for 7 months. I understood the consequences of having no Testosterone and accepted that sex was over forever. A few weeks ago I read an article suggesting 5mg daily of Cialis would allow blood flow/erections. I found that it does and it makes sex possible. I told my Oncologist but he wasn't interested in hearing about it. Why the hell did I have to stumble upon this important bit of info on the internet? Shouldn't this be a standard treatment? Cheers and good luck, Mack Link to comment Share on other sites More sharing options...
timbaker Posted December 13, 2019 Author Share Posted December 13, 2019 Absolutely. I was stunned that no one had shared this information previously. I think oncologists just have too much on their plates to think beyond there limited scope of expertise but I was originally diagnosed by a urologist who should surely have been on top of this. Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted December 13, 2019 Share Posted December 13, 2019 I thought many would be interested in a compilation of information I put together some time ago regarding the general subject of Erectile Dysfunction. Some references in the following may no longer be available, but the general content is quite informative. http://www.theprostateadvocate.com/pdf/ERECTILE DYSFUNCTION.pdf Link to comment Share on other sites More sharing options...
Patrick Turner Posted December 13, 2019 Share Posted December 13, 2019 Hi all, I was 62 at Pca diagnosis with gleason 9 and inoperable, with Psa only 6. So after the attempted open RP failed to proceed, I was assigned to ADT with EBRT. Without ADT I would have quickly died. I have not been married since 1978, and having sex with women was rare, because once a man goes over 30 his chances of having sex rapidly fade down because most women are tied to other men or the women just ain't interested in men. I never ever felt suicidal or depressed if women were unavailable. I never went to a brothel. Groucho Marx once said, "there's nothing wrong with masturbation, you meet the best kind of gals". Anyway, there's a lot to be said for giving a rub to what pokes out in front. Mick Jagger screamed at us that he could "git no satisfaction", and all I could think of about this clown of a man was "get a real job and jerk off" Sex was nice work if you could get it, and it WAS work, because you had to woo the lady, pursue her, and make her happy, and maybe she'd understand sex was an erotic experience, and maybe she'd have an orgasm, and then spend days in a kind of swoon where she thought there was nothing wrong with her life, herself, or you, and sometimes those feelings last longer, maybe a week, a year, 20 years, or 60 years, and sex kept being like healthy mental food for 2 ppl. I met my fair share of ladies who never could orgasm, and so they could not keep me interested in any relationship. It was just too boring. Alas, I found that no matter how good a man I was, and how well I treated women that they had aims and ambitions and plans which never included me, except for short term gain, and their love turned to hate within 3 years, and they could not stay on the porch. They'd depart in a teary mess, and I have to go through the whole game a year or two later when I found someone else willing and able, but as time went on it became impossible, game over. So after beginning ADT, my sexuality slowly faded down after 3 years, orgasm by any means became impossible, and fibroid tissue filled the spongy penile tissue, so hardons I have now are like a brass garden tap, useless to penetrate anyone. Pleasure is impossible, and join of skin of shaft to head is fragile, and it tears easily. I can ride a bicycle 80km, but If I had a older woman who liked men ( seems like an oxy-moron concept ), I'd have to please her orally, as I often had to as a young man, but I'd not be able to finish off by using Rodger. Most older women are completely finished with sex, and stopped having it or wanting it maybe 40 years ago. To cut a long story short, I'd much rather cycle 40km for 2 hours than try to ride a woman for 2 hours. Viagra or Cialis or any other potion to keep Rodger operational is a waste of time and dough. I have always had a strong desire for a partner, and when I did have one, there were never any complaints about my performance, but that became irrelevant at about 50, when the age of the few women I did meet went to 50 when they had paused from men, ie, were menopausal. Most did not take HRT so their desire went to zero, and their desirability. So what were all the hundreds of women on dating sites asking for, apart from screaming that they wanted a man? I spent years replying to some, but they quickly ran away because they had no intention of ever caring for and pleasing a man. So losing all my sexuality just didn't matter. The urge to find a partner lurked, but the urge to have an orgasm alone each day went to zero, and a man does not suffer if he does not get what he does not desire. I now watch movies with no interest in sex scenes, and don't like any pop music, and I waste no dough or time on the impossible task of pleasing a woman. I meet no single women; those who I have occasionally met in cafe's are usually a bit queer, and have been unable to relate to men for a very long time. But the ladies who do still love their husbands are angels. My urologist said I might have to use a penile pump to maintain erections, but its false advice. My oncologist has never mentioned sex to me. I cannot imagine him ever having any more sex that was required to make his wife pregnant twice. My GP is a man of 40 and told me the other day its years since he had sex because of the kids, and the time spent caring for them, and his wife, and time spent at work. Long term ADT is chemical castration. Its also used to dampen down the paedophile criminals. I have known men whose wives left as soon as they were diagnosed with Pca. Love does NOT conquer all, and life teaches us that love is often a very temporary situation. I refused to be led around by my Rodger after a painful divorce at 30, and my head ruled after 30. Sex remained enjoyable if invited to it by a woman, but alone, its not a necessity for a good life. We all have to cope with what life throws at us, and many of us must do that alone without any support. I recently had a blockage of small intestine caused by adhesions of intestine to scar tissue of attempted RP in 2010. I turned up alone to a hospital and had 11 days of what was the worst time I've ever had. A few ppl at my local café wondered where I went, and phoned police to report me as a missing person. Anyway, I was soon found as a patient at a hospital and they visited me, and gave me some care when I came home after the minor op needed. I lost 8Kg, but deepened my friendship with other good people. Does sex matter? Certainly NOT, and I hope to recover. I should be able to cycle up hills faster, and because I have about 8 litres of body volume, I'll move through air faster on bike, and BMI is closer to a good athlete with BMI of 22, and waist 92cm. Pca is under control with Psa 0.32, thanks to Lu177, but I cannot last forever, so I'll try to get better before I get worse, yet again. I have never needed a woman for this; it was nice if there was one there, but usually there was nobody. Patrick Turner. Link to comment Share on other sites More sharing options...
Skipper Posted December 14, 2019 Share Posted December 14, 2019 Patrick, that is a really sad story, and one I am happy to say is not reflected in my own experience. As for the information people hope to obtain from their specialist, I can only say be blunt /open and ask them if your desires are possible? My own surgeon was excellent and I firmly believed he has at least saved me from an early death but as for his help with information about sex, I might as well talk to a post, but ultimately found a good ear from the urology nurse who is funded by the National Pc Association. Good luck with getting the answers you seek but you may need to be more pro-active as it seems to me the specialists are uncomfortable outside their own particular skill set? Link to comment Share on other sites More sharing options...
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