Prostate Cancer Diagnosis – A Partner’s Perspective
I first met Alan in April 2007 at a christening. I was instantly drawn to him and he proposed to me in early June that year. It was the second marriage for both of us and, as I write this, we have now been married for 11 years. This is my personal story of prostate cancer diagnosis from a partner’s perspective.
When Alan was told his prostate cancer had been upgraded to a more aggressive cancer, I was utterly gobsmacked. I attended the urologist appointment with Alan to discuss his recent biopsy results, but we were fully expecting him to receive a clean bill of health.
I was instantly afraid that prostate cancer would kill my husband. The urologist was looking at his diary to find a suitable surgery space for Alan, and I was completely on-board with this approach. Alan, on the other hand, wanted time to digest the news and consider his treatment options so we booked a return visit to see the urologist in about a week’s time.
Alan was the one with the cancer – I kept reminding myself that it was, ultimately, his decision. I felt that I needed to back off and give him the opportunity to process his diagnosis and investigate the options available to him.
Fortunately for both of us, Alan had been practising Active Surveillance for around ten years (monitoring his cancer, rather than opting to have it treated). He had also been a Prostate Cancer Foundation Australia (PCFA) Ambassador. This meant that Alan already knew a fair bit about prostate cancer, as well as where to access further information about the types of treatment that were available.
Naturally, we were both very worried about the potential side-effects of treatment. Erectile dysfunction and incontinence are the most common problems faced by men who undergo surgery. Alan was also considering a form of radiation treatment called brachytherapy. We both watched an information video about brachytherapy provided by one of the treating hospitals. Alan was still uncertain about his decision, but I was really keen to avoid radiotherapy because I felt that the side-effects might be worse than those incurred after surgery.
This period of uncertainty leading up to Alan’s final treatment decision was one of great personal pain for both of us. I could clearly see Alan’s anguish, and his anger that the cancer had returned. He berated himself for “allowing” the cancer to come back and was really stuck in the “what if” cycle. I held him when he cried and did plenty of crying myself. I tried really hard to be supportive and not to direct his decision-making.
At this point in our prostate cancer journey, I was primarily concerned about Alan’s life. I think that he was much more concerned about treatment side-effects. I was devastated to see my husband in this situation.
Alan’s eventual decision was to have a robotic prostatectomy (surgical removal of the prostate gland). Instead of enjoying three celebrations in February (our anniversary, Valentine’s Day and my birthday), we sailed forth into the unknown – treatment and its aftermath.
Thankfully, the surgery went smoothly and Alan came home again, complete with his catheter and its attachments. The first few days were pretty tough. One practical challenge was helping Alan to empty his catheter – he couldn’t bend over enough to manipulate the catheter, so we both had to squeeze into our tiny toilet together. A strong sense of humour was essential.
After Alan’s catheter was removed (painlessly), we had the incontinence issue to face. A mix-up had occurred with the type of pads that were delivered – if you think of giant baby nappies, you’d be on the right track!
As well as visiting the continence physiotherapist to learn the correct pelvic floor exercises, Alan was measuring his fluid intake and output each day. It was very exciting when he was able to graduate from the larger pads to a slightly smaller version. These days, he only wears a slender pad if he knows that he will be standing up for a long time – ANZAC Day marches definitely merit a pad in the undies and a backup pad in a pocket.
It is interesting the things that you learn about the human body – we discovered, by chance, that a man can have an orgasm without even the slightest sign of an erection!
I found that Alan was very quick to give up if he couldn’t get or maintain an erection. I kept reminding him that he didn’t need to “perform” and that we could still enjoy ourselves intimately. One thing that never fails to please both of us is cuddling and I definitely recommend it.
These days we mostly depend on Alan injecting his penis with a substance called Trimix. I think he is incredibly brave, and I wish we could get a more reliable erection without the needle. Viagra tends to be less effective and can leave Alan with annoying side-effects. The one thing that is always required is the imagination – fantasising is very important.
Altogether, Alan and I have been on quite a journey since 2011 with his erectile dysfunction (ED). A couple of things stand out in my mind as being essential ingredients for dealing with ED:
“Persistence will pay off, eventually;
Humour is a great way to defuse disappointment; and Maintaining communication and non-sexual physical intimacy are vitally important to keep the relationship healthy.”
I feel so lucky that Alan is still alive eight years after his surgery. Even better, he is healthy and happy. Our relationship is probably stronger than it was prior to his diagnosis. Our sex life is very different from what it was pre-cancer, but the fact that we actually have an ongoing sex life is fantastic.
My message to other partners of men diagnosed with prostate cancer is to be very patient, very caring and to pursue improvement in all areas of your relationship. Never give up!
If you are reading this article before June 2020 and have recently been diagnosed with early-stage, low-risk prostate cancer, please consider joining our research trial www.navigateprostate.com.au to help navigate your treatment options.
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