Prostate Cancer Treatment Side-Effects – A Partners Perspective

Prostate cancer treatments may damage nerves and muscles near the prostate, bladder and bowel which can cause side-effects such as erection problems, urinary incontinence, a lowered sex drive and infertility.

Here we share an extract from the Navigate trial website where four women talk about their experiences of supporting their partners through treatment and the side effects.

Text version of recorded audio:

Danielle:

Later on after he’d had the surgery, he actually was quite unwell after the surgery much more than what I had expected or than what I’d been prepared for.

He had come home with a drainage tube in to his bladder, which was very, very upsetting for him.

He could not get comfortable at all sitting, standing, laying down – nothing.

He had it in for quite a while, there was a fair few problems in that department.

So we ended up going back for it to be removed and then he started to feel better.

I think it was more a mental thing than anything else, but there was definitely pain.

He just could not relax and that sort of seemed to be a start of a different personality showing.

Fiona:

…bluish purple colour and it was freezing cold because the damage had been done to the blood supply.

This was really important that we realised that we had to keep the penis stimulated in order to get that blood supply again and to repair any damage to the blood vessels and also to the nerves in the area.

So we did that and we discovered in the process that it’s possible for a man to have an orgasm without having any erection whatsoever which was something we didn’t realize.

We’ve actually continued down the path of using constant stimulation and oral sex in order to get around the problems because Alan very rarely is able to have an erection now without the use of any type of medical intervention.

He’s tried the little blue pills Viagra, he’s also tried injecting into the penis with a substance called Trimix.

This means that we no longer have spontaneous sex. Sex has to be planned and it’s not how it ever was before because although the penis is engorged with blood, it is not as rigid as it used to be so it does not feel the same, and it is not a similar thing.

We still manage to enjoy our sexual relations, always with a good sense of humour, lots of hugging, lots of joking, but it is different.

Suzanne:

The other thing is that you know there’s so much emphasis on the sexual act itself, you know that there’s other ways of being intimate.

Fiona:

Viagra is not the magic bullet that it’s made out to be in the press. Viagra sometimes works and sometimes doesn’t. Often Alan will end up with a headache and a stuffy nose instead of an erection, that’s one of the problems.

Also quite a lot of stimulation is necessary after you take the tablet in order for it to work.

He also tried once with a substance called Caverject. That was when he had recently returned from hospital and that was a complete disaster.

That was an injection into the penis, and we went home in a taxi, and I think it was the most agonizing experience ever.

His penis was engorged to such an extent and then we thought it would never go down again. We were terrified and we never tried that again.

But we used another type of medication called Trimix, which once again is injected into the penis. I’m personally not very fond of it because I think it’s such a horrible thing to have to do to yourself.

Alan’s really brave, it does sting a little and the actual injection is not that painful but it’s when the substance gets into the bloodstream it actually has a sting.

Then there is the erection, but the erection as I said is not as it ever once was.

So sex is different we find that the most effective is oral sex, it works 100% of the time whereas the others don’t.

But I think it’s important to try different things and always to maintain a good sense of humour.

Maria:

Just part of the operation we went to the hospital and I was there waiting and I dealt with every day by acting or being as normal as possible.

Even though Wallace did have catheters and was making jokes of carting this big urine bag around, every day we would eat normally and we just take each day as it comes.

I went to work and then he’d be basking in the sun when he could and taking it easy.

He thinks he’s Mr. Superman so he can do anything he wants and then finds that it’s a bit of a setback, so we’ve dealt with that.

We realized we were perhaps a little bit too complacent of this operation. It is a huge operation because you don’t see the internals, although he was in a lot of pain.

He started walking and doing our exercises such as walking and found that that was good.

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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