I wouldn’t wish long term hormone therapy on my worst enemy! There are days where it feels like a punishment for something I may have done in a previous life. Yes, I’m grateful that it’s keeping my cancer at bay for now and yes, the cost is worth it, but it’s also a significant cost. I thought I’d try to explain all the impacts on day to day living so that other men think long and hard about their prostate health and do something pro-active so that they don’t end up living the life I do. It’s really simple, men in high risk groups should insist on having a PSA blood test at least annually in my opinion and a great starting point to assess their risk is this 30 second risk checker from Prostate Cancer UK https://prostatecanceruk.org/risk-checker
I started on hormone therapy immediately that I was diagnosed stage 4 in May 2017. I have 3 monthly injections in my stomach of a drug called Prostap. This stops the production of testosterone which feeds prostate cancer thus starving the cancer. I also went immediately onto Abiraterone, a drug that stops the adrenal glands producing pseudo testosterone. It’s having no testosterone that causes the side effects. Effectively it’s equivalent to chemical castration and I liken a lot of the side effects to what a menopausal woman goes through. I’m certainly much more sympathetic to menopausal women than I ever was before!
Loss of body hair
Pretty inconsequential in the scheme of things but it means that I feel the cold more than I used to. There are minor advantages though. I used to have to shave sometimes twice a day but now I can get away with once or twice a week and it saves money on razor blades and haircuts. Not a bad thing during lockdown.
Taking steroids alongside Abiraterone significantly increases appetite and thus weight gain. Hormone therapy also produces a ring of fat around the middle. This can be controlled with exercise but exercise gets ever harder because of the weight gain. Bit of a viscous circle.
Loss of muscle mass
Exercise is vital to combat this but it’s another viscous circle as exercise gets harder. For me, as a sub-elite athlete prior to diagnosis, this has been a major challenge both physically and mentally as I’ve dropped down the pecking order to being a back of the pack plodder. Age hasn’t helped that either!
Loss of bone density
This can lead to osteoporosis and cause significant problems including spinal compression. Thankfully my oncologist has taken a pre-emptive strike to try and ward this off with three monthly infusions of Zometa but not before I’d tripped during a marathon relay and smithereened my left wrist resulting in 3 days in hospital for it to be plated, pinned and wired!
Hence the reference to being a menopausal man! Initially these were unbearable as I could effectively externally combust without any warning. As time has gone by things have improved and I only really suffer at night with night sweats. Trigger foods are generally avoided including Garlic and chilli.
Loss of libido and erectile dysfunction
This is horrendous and for me, watching my erections fade away as the treatment took effect, felt a bit like watching my life blood fade away. I was only 60 at diagnosis and didn’t expect to spend my life as a eunuch! Loss of libido is hard to explain but just imagine never even having sex cross your mind. You need something to turn you on to gain an erection but the mind never goes there and so the body doesn’t follow.
A cancer diagnosis is bad enough, especially a terminal one. Its life changing and can totally take over your life when the black dog of despair descends but then add in at that having no testosterone also plays havoc with your emotions. There have been many times where a thought has crossed my mind and I’ve burst into tears. Many times that I’ve cried myself to sleep at night.
Living with terminal prostate cancer and the side effects of long term hormone treatment is awful especially when you also know that your life expectancy has been considerably shortened. Early diagnosis will generally lead to much better outcomes. If you don’t want to end up like me please do something proactive about your prostate health. Today is not soon enough!