Prostate cancer surgery left me with erectile dysfunction – but I don't care

Too many men think they can wait for signs or symptoms of prostate cancer before getting it checked out.

I was one of them.

After a close friend sadly died from prostate cancer having been diagnosed too late, my wife prompted me to go to the GP for a PSA blood test, which assesses the amount of prostate-specific antigens in the blood.

I had no symptoms, didn’t feel unwell and there was nothing visibly wrong with me.

My test detected a high PSA score but I was told to wait a year for a follow up. After sleepless nights and feeling stressed, I asked for another PSA blood test sooner.

A long investigation followed and I discovered I had prostate cancer in June 2019, aged 57.

Thanks to my wife, I stand here now happy, and healthy. For that I am forever grateful.

Life is good, but it’s certainly not the same.

A new study released from Prostate Cancer UK for its ‘What on Earth is a prostate?!’ campaign has highlighted the need for continued and heightened efforts to ensure men have the facts they need to understand their risk of the disease.

According to the study, three quarters (74%) of men don’t even know what the prostate does, and nearly half (44%) have no clue where it is in their body.

This lack of knowledge really worries me, which is why I want to do everything I can to raise awareness.

I had very limited knowledge of the prostate and of prostate cancer before our friend passed away.

The general lack of knowledge isn’t helped by the fact that the side effects of prostate cancer can often be seen as taboo – with erectile dysfunction or incontinence both common.

It can be emasculating. 

Consequently, men might not want to talk about it for a number of reasons. They may feel embarrassed, or like they’re on their own. They might fear they won’t be regarded as a ‘real man’ anymore and they’ll be made fun of – but I want to encourage men to overcome their concerns and talk about these issues.

Because I know them all too well.

After I had my prostate removed through a nerve sparing radical robotic prostatectomy, I suffered from several side effects.

I experienced urinary incontinence and had a catheter for about two weeks, although this cleared up fairly quickly after it was removed, thanks partly to the pelvic floor exercises I did before my surgery.

Only 35% of men realise that early-stage prostate cancer can often have no symptoms

Some of the side effects, though, are still with me. Having tried tablets, which didn’t seem to help and gave me blurred vision and headaches, I’ve had to come to accept that long term erectile dysfunction has continued and will remain.

Other options offered haven’t appealed (the pump, injections) and so I’ve chosen not to try these. If I was younger, I might consider other options, but this would still have been a joint decision with my wife. It’s not all just about me.

Before my operation, I don’t think I really understood how severe the potential nerve damage might be, but being close to 60 this wasn’t so important to me or my wife. The important thing was that I was still alive, and here for her and our family.

At times I do think about what has happened to me and the long-term side effects that have impacted my sex life – and that won’t stop.

But, while I know my erectile dysfunction won’t improve going forward as the nerve damage will not repair, this is something I can live with and have accepted, and it does not affect my mood.

My wife and I can still hug and have cuddles, and that is good enough for us both.

After surgery, I pushed myself too soon, and went back to my job at the bank. About three months later, I suffered severe fatigue and depression and I was signed off work for a further six weeks.

In the end, I realised I needed a much less pressurised work environment, and left for a new job a year and a half later.

I’m much more emotional than I used to be and I cry far more easily than I used to.

I have good days, and not-so-good days in regards to my mood, but it’s about finding coping mechanisms that work for me.

One of the biggest things is talking to people.

Talking helps me find my own answers. Often, when you talk out loud, a problem isn’t as big as you thought it was and you immediately think of other things that put a ‘bigger picture’ context to it. It’s important to find someone who will actually listen when you do this, without necessarily jumping in with their own advice or suggestions.

And of course, most importantly, by talking openly about it, I am encouraging other men to think about their own risks. If as a result, just one person’s life is saved, then that is so valuable.

It’s been important to me to keep track of my story, and I’ve kept a sort of diary or journal about my entire journey: from the initial PSA blood test, to surgery, and life after, which I keep updating – recording my feelings when I have a new blood test, or if I see a prostate cancer story in the news.

I read this when I have a tough day and remind myself of why I’m feeling how I am, but how it could have been so much worse, and that good days follow rough ones. I also try to include what I have done to help others, to give myself the reminder of the positive things that have come from this experience.

I know how lucky I’ve been. If I had started the process even a few weeks or months later, my outcome could have been very different.

Over 52,000 men are diagnosed with prostate cancer each year, but I’m proof that this disease is treatable if caught early. Shockingly, only 35% of men realise that early-stage prostate cancer can often have no symptoms. Too many people think it will show symptoms or signs always – or most of – the time.

That was me, just a few years ago. Don’t let it be you. There is support out there – don’t be afraid to reach out.

To find out more about how to bust common myths about the most common cancer in men and save lives, visit: prostatecanceruk.org/whatonearth

Catching prostate cancer early saves lives. Check your risk today at prostatecanceruk.org/riskcheck 

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