Coping With Side Effects of Longterm Hormone Therapy
Last updated: April 2023
The hardest part of my terminal diagnosis in May 2017 has, to date, been coping with the side effects of my treatment, which has been hormone therapy coupled with Abiraterone and steroids.
Talking about testosterone
For those who don’t know, testosterone feeds prostate cancer and so the treatment removes it, in my case via 3 monthly injections in the stomach. Abiraterone stops the adrenal glands forming pseudo testosterone, and so it can produce the perfect storm, double whammy.
Testosterone is a vital part of being a man, but women also need testosterone, as it’s essential to help build muscle mass.
Now that I’m an honorary woman, I’ve become much more sympathetic to menopausal ladies, as I’ve effectively become one!
Coping with side effects
I thought I’d write a piece about the impact of treatment and how I’ve coped with the side effects. It is a little irreverent in parts, but I’m sure you’ll forgive me.
Let’s start with the easy bits:
Hair growth/loss of body hair
Well, it saves a bit on haircuts, which hasn’t been a bad thing in lockdown! The main issues here are that without body hair, you do feel the cold more, which means wearing layers. Even more important, to be able to get the layers off quickly when you get to the next side effect.
This is the menopausal lady bit. Initially it was horrendous to deal with. From absolutely nowhere you’d suddenly start feeling like you were on fire, and you’d be dripping with sweat.
Now, after 4 years of hormone therapy, thankfully, the sweats are few and far between, but I found acupuncture a big help. And I know that there are medications you can take to help. However, I was already rattled from the number of pills and supplements I take each day, so I didn’t fancy any more.
These are still an issue but are a lot better. Currently two or three each night now, when it was much worse previously. Throw the duvet off, cool down, and then back off to sleep. Saves money on duvets, as we now only use a summer one all-year-round. I’ve also become a big fan of fans!
Reduced muscle mass
This has been a lot tougher, given that I was sub-elite athlete when I was diagnosed at age 60. The only way I've found to deal with it is to exercise. It’s a bit of a viscous circle, though, as it gets harder to exercise but you need to do it more to maintain less. It means that I’m now a lot slower, and small hills look and feel like mountains. But it’s only a hill, get over it!
Reduced bone density
A trip during a marathon relay led to three nights in hospital while my wrist was plated, pinned, and wired. Pretty grim side effect, to be fair! To counter the continued bone degradation, I tried Alendronic acid in pill form. Horrible things. Had to be taken first thing before food and you have to stay upright in order to ensure that they went down your throat and avoided burning a hole in the throat.
Didn’t last long on those before switching to Zoledronic acid infusions every 12 weeks. Hopefully these will stop my spinal cord from collapsing!
Not exactly the perfect bed fellow for reduced muscle mass and bone density! I've found daily steroids give you a huge appetite, and the only way to keep the weight down is, you’ve guessed it, exercise.
Impossible to really describe, but think of when you’ve had the flu and all you’ve wanted to do is collapse on the sofa. I've found only one way to deal with this, and that’s exercise. Yes, I know, a bit of a stuck record when it comes to exercise!
Forewarned is forearmed as they say. When the oncologist says, “Once you start on hormone treatment, you won’t be able to get an erection again but don’t worry; you won’t even think much about it because you’ll have no libido,” the first thought wasn’t, “Winner, winner chicken dinner,” for sure. Thankfully a very understanding and imaginative wife, plus little yellow pills and a vacuum pump, have helped maintain a small amount of function. Enough to see stars every now and then!
Loss of libido
What it says on the box. Just imagine never ever thinking about sex again when you’re 60!
Getting tested early
One thing that I believe is that early diagnosis and curative treatment can give significantly better outcomes than I’ve described. Hopefully most men won’t want to have to deal with what I am, and they’ll go and get themselves tested. Just do it fella’s, you know it makes sense!
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