The truth about sex and cancer

“People trivialise sexual issues for cancer patients – It becomes like learning about sex behind the bike sheds again.”

So says Elvin, 66, of his experiences with prostate cancer and the lack of discussion around sex that can still be detrimental to both mental and physical recovery from such illnesses.

This is why Macmillan Cancer Support have embarked on a new partnership with sexual wellness brand Lovehoney to break down taboos around sex and intimacy following a cancer diagnosis.

According to Macmillan’s research, almost a quarter (23%) of people with cancer in the UK (about 700,000 people) report serious concerns about sex, loss of libido or fertility as a result of their diagnosis.

And fewer than half (39%) of those who want help with concerns around sex or fertility have had support.

Ali, who is featured on Macmillan’s new sex and cancer hub

Says Elvin, “We all suffer with cancer in different ways, but sex is an issue for everybody, different genders, different sexualities, different sexual needs.”

In his experiences there is a huge gap in support in this area, even a lack in important information. He says while the doctors are excellent, “They are experts in removing cancer, they are not experts in sexual health. All their focus is on removing the cancer, which is fair enough. But the only things I was told about my prostate cancer treatment was it would impact my continence and my potency.

You are never told there is a high chance of shortening – literally losing size and thickness – nobody tells you about Peyronie’s Disease, where scar tissue can result in curvature of the penis, and it’s never explained that with certain procedures you won’t have semen anymore. There’ll be no more ejaculations.”

All very important details you’d want to know, right? Which is where Macmillan’s new hub comes in: a place with information, videos and discussion around all areas of sex and relationships for all different kinds of cancers.

“Sex and intimacy is a big worry for a lot of people who are diagnosed with cancer because of the treatment – the side effects and the loss of confidence in your own body,” says Tracey Palmer, Macmillan Information and Support Manager. “But it’s something people find difficult to talk about – they suffer in silence. It’s a bit taboo and sensitive and there might be cultural reasons why they don’t want to talk about it.

Macmillan are always looking at holistic care for people. It’s not just about treating the cancer it’s about how it affects all areas of your life.”

The hub, therefore, which will be a place to bring sex into the conversation and indeed normalise it as a vital part of the conversation.

“On the website there’s a new link about sex and cancer, including videos of patients talking about the issues they had,” says Tracey, “It’s very powerful. Because people often think it’s just them that has a problem. When they realise it’s everyone, it’s really helpful.”

Such an approach is one taken by Elvin, who is an immensely charming speaker and activist around prostate cancer, who takes a very open approach to discussing the issues faced and has managed to engage a great many men as a result. He says many men don’t know what they prostate does – produce and ejaculate semen – and its role in erectile function, and therefore are not prepared for the serious impact it can have on their sex lives.

Elvin, who campaigns for more awareness around prostate cancer

“A lot of the information is too medical – what are they talking about?” he says, “The impact on my mental health astounded me, and scared the life out of my wife, Jude. When I talk to guys about prostate cancer, I say there’s a high chance you will be hit hard by the mental health challenge…You never think for one minute in your life, that you won’t be able to get erections.”

“Cancer affects your identity,” concurs Tracey, “Including your sexual identity. For some people sex is a big part of it, for others, less so. But it can chip away. With prostate cancer treatment, patients can end up with erectile dysfunction and incontinence. We’re quite good at giving out Viagra or pumps, but actually the emotional and psychological impact on people is not really addressed.”

Add to this, when it comes to men, is a additional reticence to talk. Tracey runs support services for cancer patients, but says, “I found only 25% were men, and of those only 4% were prostate patients. And I knew we had a huge cohort of prostate patients and knew that they were on hormone treatments that would have these side effects.

They didn’t seem to think they needed any support, but when you do get them to do the talking they realise, ‘Oh, it’s good to talk about these things.’ It’s a revelation.”

Elvin has found this too: “All the men I speak to, all they ever talk about is their sexual function. You don’t appreciate it until it’s gone, and you have to talk about it.”

The new hub therefore, is going to provide much needed help for all those affected by cancer – as well as to encourage further awareness around prevention.

To find out more about sex and cancer, and to access support visit macmillan.org.uk/cancerandsex