I was 58 when I was first diagnosed with prostate cancer in 2015. I tried alternative treatments initially as I was not that keen on potential side effects of either surgery or radiation treatment – particularly on my sex life. My elder brother had been diagnosed with prostate cancer also at age 58 in 2009. He had robotic surgery and follow up radiation therapy.
Initially it was ‘I would rather die than have my prostate removed’. This was based on research I did following my brother’s diagnosis and is why I tried alternative treatments. Sex was really one of the most important aspects of my life. More than most people, I think. Extremely important. A constant focus.
Here’s the story of how my experience of sex actually got better after my cancer reached the point where I could no longer postpone treatment.
Aggressive cancer spreading beyond my prostate
With the alternative treatments, my PSA dropped for a time but then began to rise steadily. In 2017 I returned to my urologist and was referred to our public health system for surgery. Surgery wait time was 7 weeks and I had open surgery.
Post op histology returned Gleason Grade 9 (4+5) with peri-neural invasion and extra-prostatic extension.
My high Gleason score, and the identification of cancer cells beyond the prostate itself, were signs that the initial surgery might not be enough. Indeed, after surgery, as expected, my PSA dropped to 0.2. But then it began to climb again and I needed further treatment.
In 2018 I had radiation treatment to the prostate bed (that’s the area around where the prostate was removed) and 12 months of ADT via the hormone-suppressing drug Zoladex. It was an anguished and distressing experience.
After ADT it took about 18 months for testosterone levels to recover and libido to return. Physical impact on my strength and endurance during that time was also a heavy burden.
Nobody told me about penile rehabilitation
Regarding erectile function – that disappeared with the surgery. Incontinence was an issue but improved over time and was manageable. I didn’t receive any useful info about maintaining penile health but my own research provided the necessary info. However I think that came a bit late. I tried Viagra, alprostadil injections, pumps etc but all had their downsides. Eventually I decided that the disappointing outcomes didn’t warrant the effort required.
I then got into the radiation and ADT phase which took away the desire anyway. After ADT completion I went through a 2nd puberty as testosterone recovered. Erections weren’t much better but surprise, surprise: I found I could have fantastic orgasms (self or with my wife) and multiple orgasms. After that I didn’t worry about trying to recover erections again.
Sex better than before – to my surprise
I was very happy with where I was sexually. My wife was happy also and penetration options were available if desired. I actually came to the conclusion that the very full and active sex life I had previously had was actually surpassed by what I was now experiencing.
Look out for part two of my story – including my choice of a radical alternative to lifetime on ADT medication.
Wonderful. Can this ADT be administered at a public health facility?
John’s is a salutary story.
The initial impact of the diagnosis is sheer fear of the big C, life suddenly ending, mixed with the anguish of …is this the end, no more sex? It seems a nightmare whatever treatment is chosen, it will have some impact on a couple’s sex life. After my prostatectomy our reaction was similar to John’s and we were not willing to surrender our sex life to this seeming catastrophe.
Many men (and their partners) often simply give up, either because their sex life is not very important to them but often because there is no or very little advice easily accessible. We had to research and find our solutions to incontinence and erectile dysfunction. We believe that this is because, unlike other cancers, particularly breast and bowel cancers, there are no specialist prostate cancer centres in hospitals. Rather than providing an integrated approach to prostate cancer patients, almost always the patients have to rely only upon urology surgeons whose expertise is surgery, but are not much help for aftercare and rehabilitation. Therefore unfortunately many men and their partners give up at the start of their new life post prostatectomy.
Like John, it was our initiative, determination, imagination and love for each other which helped us to regain our intimate life. And like John, our sex life, in many ways has blossomed in different ways. Who knew that the outcome eventually of this cancer would actually enhance our sex life in these later years?
Thx for your story John. That lived experience is priceless and inspiring to others battling PC.