It’s the hidden side effect no one wants to talk about – but here’s why we must.
The first time Lesley Lloyd had sex during her breast cancer treatment, the pain was excruciating. ‘There was no stretch,’ she says. ‘All the elasticity was gone. Sex is an important part of who I am. I’d felt rubbish for so long – I was scarred, I’d lost my hair, I’d put on weight – but I wanted to re-engage with life, so we persevered.’
This was three years ago when Lesley, a management consultant who lives in Kent, was 54. At the time, she’d been with her partner for three years and their relationship felt new, playful and intimate. ‘When I found the lump myself – it felt really big – I told him I was going to sue him for dereliction of duty!’ she recalls. A lumpectomy, total node clearance and chemo swiftly followed and it was during the later chemo sessions that sex resumed, albeit painfully. Then it began to cause bleeding.
‘The fear was that the cancer had spread to my ovaries so I was fast-tracked to a gynaecologist who did all the tests and told me the bleeding wasn’t caused by cancer. He explained that the chemo had brought on the menopause – which resulted in the loss of elasticity – and that sex was making me tear. I asked what I could do about it and he said, “Nothing.” The message seemed to be, “You’ve got over cancer – what more do you want?’”
Back home, in search of answers, Lesley logged on to the Breast Cancer Now forum and asked if anyone else was struggling with sex. ‘Everyone gave the same response,’ says Lesley. ‘They all posted, “Yes! Thank God someone has said it.”’
Though breast cancer awareness is probably greater than it has ever been, its impact on sex and intimacy remains largely hidden; a last taboo. Recent research by Breast Cancer Now and YouGov involving more than 1,000 women diagnosed with breast cancer in the past ten years found that almost half have experienced sexual difficulties as a result of treatment, the majority suffering with this for more than three years. Despite this, three quarters had never been informed that this might happen. Raising the issues themselves and asking a health professional for help in the context of a life-threatening illness was difficult for many of these women; a third of those who wanted support didn’t ask – they were too embarrassed or felt it would seem ‘trivial’.
Emma Waring, a former nurse and sex therapist who has worked with cancer patients, says others who have asked have felt dismissed, like Lesley. She explains there are many reasons breast cancer can have a devastating impact on sex and intimacy. ‘With the most common issue – chemotherapy bringing an early menopause – you’re battling the same problems faced by menopausal women,’ she says. ‘That could mean a drop in libido, dryness, pain during intercourse, vaginismus – which is when the vaginal muscles anticipate pain and go into spasms.’ And that’s all before the better-known side effects of chemo, such as hair loss, nausea and exhaustion, as well as the nerve damage and tenderness around the breasts that can come with radiation therapy.
‘For many women, there’s also the huge impact of losing one or both or part of your breast,’ says Waring. ‘I’ve met women who feel so much grief and just can’t get past being naked in front of their partners any more.’
Waring has treated patients whose concerns have been dismissed by health professionals. ‘When you’re dealing with life-threatening conditions, I think there’s such a focus on curing you that everything else can fall by the wayside,’ she says. ‘If the health professional has never touched on the subject, you might not feel you have permission to raise it yourself. I’ve had patients who have and the medic has said, “You should be grateful that you’re alive.” That’s not uncommon. Sex is such a sensitive issue so if you summon up the courage to ask for help and get that kind of response, you start to question yourself: “They’ve saved my life and I still want more – is there something wrong with me? Am I a nymphomaniac?’”
Lesley wonders whether male patients would be met with the same response. ‘Compare it to prostate cancer,’ she says. ‘The fact that treatment can lead to erectile dysfunction is widely known. I wonder at what point it’s mentioned in consultations – I imagine it’s pretty early on.’ In fact, this side effect is something science is working hard to change, with recent reports on a pioneering new surgical technique that can reduce nerve damage and save the erection for prostate cancer patients, which could be available on the NHS within five years.
‘I just don’t believe there’s the same effort made for women,’ says Lesley, ‘because sex isn’t meant to be important for us. All the jokes are still about how much we want to avoid it. When you’re diagnosed with breast cancer, you come away with a tree’s worth of leaflets packed with information – but no one mentions sex. The NHS works so hard to make sure you don’t throw up during chemo but do they work so hard to help you have sex again?’
Eve Bampton, 29, who lives in West Somerset with her husband, has found all these issues exceptionally hard as a newlywed after marrying in July last year – and being diagnosed with breast cancer at 27 when she and her partner were busy doing up a house and planning their future.
After a lumpectomy and lymph node removal, Eve underwent emergency fertility preservation – which she describes as ‘IVF on speed’ – to create 15 frozen embryos before chemo hurled her into an aggressive early menopause. After this came radiotherapy, which made her breasts extremely tender. ‘We went for so long without having sex,’ says Eve. ‘During fertility treatment, sex is off the cards anyway – you’re not allowed to do it even if you want to. Then you have chemo ravaging your body. Losing my hair was terrible – it was thick and wavy, down to my waist and was “my thing”. During surgery, they use a blue dye on your breasts to check for cancer and it leaves a stain for quite a while. Before this happened, I used to go to the gym and was really active. Then I lost muscle, I wasn’t strong or toned any more – I was bald, scarred and I had blue nipples!’
As recovery set in, resuming where they left off was impossible. ‘Even when things are “normal”, if you go months without having sex, there’s such a big wedge between you. We didn’t really know how to talk about it because we’d never had to before. It became the elephant in the room.’ When they did start having sex, Eve found it extremely painful. ‘I went to my oncologist with a long list of questions,’ she says. ‘He was very nice but didn’t seem to know much about it.’
Anne Rigg, consultant in medical oncology at Guy’s and St Thomas’ NHS Foundation Trust, says that when women raise the issue much can depend on whoever their doctor happens to be. ‘Unfortunately, it might rest on how much experience they have as well as how comfortable they are talking about sex, which can be a very personal thing,’ she says. Rigg herself had this pointed out to her by a breast cancer patient she was treating ten years ago. ‘She told me that I’d never spoken about anything that “happens below the waist”,’ she says. ‘I’d warned her about the possibility of early menopause and hot flushes, the impact on memory or bones. I hadn’t talked about sex. I saw her recently and thanked her for teaching me a valuable lesson.’
According to Rigg, the ‘gold standard’ would be for breast clinics to have an assigned gynaecologist (some do, but most don’t) and, for women who want it, sex should be recognised as an essential part of the rehabilitation process along with eating and sleeping.
There are signs that attitudes are changing, however. ‘Thankfully, so many people now survive cancer that we’re more aware of the consequences of treatment,’ Rigg says. ‘In the past 18 months or so, a key topic in cancer care is “good survivorship”. It means going beyond just curing patients and looking for ways to do minimal harm in transit.’
Meanwhile, for many women it still feels like a case of muddling through on your own. So, after much research, Lesley invested in a sex toy that she gently used each morning and evening. ‘I learned that the vagina is like a muscle – if you don’t use it, you lose it – so I literally treated it as a bit of a workout, an exercise routine. I reached the point where we could have sex without pain.’
Eve is making a similar effort. After her consultation with the oncologist, she turned to her breast cancer nurse, who managed to access a dilator (a tube-shaped device that is used to stretch the vagina) from the radiotherapy department. ‘Things are getting better,’ says Eve. ‘It’s also because I’m getting back to normal – I’m back at work, I’ve got some hair, I’m able to exercise, so I feel better about myself.’
But, she adds, ‘The spontaneity has gone. As a couple, we’re struggling with issues you never expect to face when you’re young and just married – it shouldn’t be a case of “you’re here, be grateful”. There needs to be more help, advice and research. Not everyone’s going to be as pushy as me.’
How to get your sex life back
Sex therapist and author Emma Waring offers advice for those having cancer treatment.
Talk to your GP
If you’re suffering severe menopausal symptoms, depending on the type of cancer you had and whether it is oestrogen receptive, it may be possible to be prescribed HRT as a topical oestrogen cream or patch. However, some doctors advise against this because of the possible cancer risk. GPs can prescribe vaginal moisturisers, lubricants and in some cases dilators to help stretch the vagina over a period of time. The more you use it the easier it becomes.
Talking to your partner is important, and you need to be specific about what you need and how you feel. They may think you’re avoiding sex as you don’t desire them any more; you may worry that they’re avoiding it because of your changed body. The less you say the bigger the gap between you grows. A sex therapist can help by gently exposing your thoughts and feelings. For example, the therapist could ask, ‘Is there anything you used to enjoy that you no longer want to do?’ Unless you discuss it, your partner won’t know.
Recognise what works for you
You may need to make changes in order to relax and for sex to feel comfortable – that could be wearing underwear or keeping part of you covered. Don’t assume you need to start back where you left off. Sex may be different but it can still be good.
Reconnect with your sensuality
Sex starts with sensuality, and breast cancer treatment often shuts down that whole part of you. You’ve been medicalised – gone into hospital, had to sit in a gown, had your breasts drawn on by doctors, been prodded, poked and operated on. It’s common to dissociate from your body to get through all this – but if you’re feeling dissociated from yourself, you can’t get aroused. Focus on delivering self-care. Remember what it’s like to rub on body lotion or to slip into some beautiful silky nightwear. It could be exercise that makes you feel strong, toned and empowered – getting back from a good run and standing under a shower. Tap back into the small things that gave you sensual pleasure.
Think in terms of seasons
Breast cancer can feel like a long winter, and you may need to get through the grief you’re feeling, just as your body needs to recover from the trauma. But don’t think that this is for ever. So many couples come out on the other side with an intimacy they’d never had before. Spring can follow.
Breast Cancer Now is working with Ann Summers to help start the conversation about sex and breast cancer. My Viv is a new line of sexual wellbeing products by Ann Summers, including dilators, lubricants and vaginal moisturisers. ten per cent of profits will be donated to breast cancer now. see myviv.co.uk or breastcancernow.org/intimacy for more details.