Talking about sex is difficult at the best of times – and particularly when things aren’t going right. Most of us will be reluctant to bring it up with our partner, let alone a doctor. Add breast cancer into the mix – and this reticence is only magnified. One in eight women will develop the disease in their lifetime. And the majority will have been enjoying an active sex life.
But breast cancer surgery can have a crushing effect on body image and self-esteem, while drugs to treat tumours can bring on the menopause, shut down libido and make sex terribly uncomfortable. Despite this, intimacy is rarely, if ever, discussed during medical consultations. Perhaps women are too afraid, or too embarrassed, to mention it.
Perhaps doctors are, too, or maybe they’re simply too focused on survival statistics rather than quality of life. You see, this is a situation I have personal experience of, from both sides of the consulting room table.
Dr Liz O’Riordan, 44, has been treated for breast cancer twice and has written about her experience bringing the additional knowledge she has from her day job as an NHS Consultant Surgeon specialising in the disease
Dr O’Riordan said she was 40 when she received her diagnosis, file photograph
I’m 44, and a consultant breast surgeon at East Suffolk and North Essex NHS Foundation Trust. The mainstay of my job is treating women with breast cancer. I discuss diagnosis, prognosis, treatment plans and possible outcomes.
But in the past I rarely, if ever, discussed sex, always assuming that a GP or breast care nurse was having that conversation.
And then, at the age of 40, I received the devastating news that I had breast cancer myself. I’d had cysts before so when I noticed a new lump in my left breast, I wasn’t that concerned but I had it checked anyway. A few weeks later a mammogram, ultrasound scan and subsequent biopsy confirmed I had a large tumour.
I knew what was to come – chemotherapy followed by a mastectomy and radiotherapy. My tumour was oestrogen-sensitive so I also needed the hormone-blocking medication tamoxifen, which triggered an instant menopause.
At the time, I was in denial, struggling to accept the truth about what was happening, never mind share it with my loved ones.
Dr O’Riordan, said when she married her husband Dermot she never thought about getting sick when she made her vows ‘in sickness and in health’
Later, I made sense of my emotions in words: I began to write about my experience online, and found a new community who share stories and advice about cancer with honesty, warmth and sometimes humour. In 2016, I wrote a post entitled: ‘Let’s talk about sex…’
To be honest, I found it incredibly hard to put it into words as it’s so close to home.
I’d been married to my husband Dermot, 54, who is a fellow surgeon, for just a few years when I was diagnosed. Like most married couples, we vowed to love one another ‘in sickness and in health’. But when you say those words, you never really think you’ll get sick.
Suddenly, my husband had a wife with a numb, often painful fake breast and a Brillo pad for hair who, thanks to a chemically induced menopause, threw the bed covers off in the night, dripping in sweat.
Dr O’Riordan suffered a premature and immediate menopause after she had to take Tamoxifen as part of her breast cancer treatment
At one point, I even told him to leave me for a woman with two breasts and a healthy libido.
What Liz’s husband Dermot has to say…
Dermot says: ‘Inevitably, there are periods in any relationship when you don’t have sex – it’s a fact of life.
‘But cancer throws everything out of kilter.
‘It’s not that you don’t want to have sex. And it wasn’t a matter, for me, of whether I still found Liz attractive, or whether I still loved her. Of course I did.
‘But when your partner is going through hell, it’s just not going to happen. When you haven’t done it for a while, it can be awkward and unnatural and not very spontaneous.
‘It’s just a fact of life that your sex life is never going to be what it was.
‘And you can feel alone, but you just have to lump it.
‘If sex isn’t talked about, not having sex becomes the new norm.
‘So, unless you talk about it, you will never get your sex life back.’
Dermot told me to stop being so stupid, that he loved me and wasn’t going anywhere. And he has been truly amazing at coping with whatever treatment threw at us.
But the guilt persisted as I knew a relationship with little intimacy is not a good one. Sex may be the glue that keeps couples together but cancer can tear them apart.
After breast cancer, you need to approach a physical relationship differently because your libido will never be the same.
Last May, my cancer came back in the scar tissue where my left breast had been. After an operation to remove it and more radiotherapy, I needed to take a different kind of hormone-blocking medication as tamoxifen hadn’t worked.
In order for the new drug to work properly, I had to stop my own production of the female sex hormone oestrogen, produced by the ovaries, which is why, in September, I had mine removed. I wrote in that blog post about sex: ‘I’m slowly learning to accept the new me.’
And I still am.
Today, I ask all my patients about their sex life. If you’ve had breast cancer, you might not feel bothered about sex any more and that’s OK. But if you do want things back on track, I can help – using my own experiences as a doctor and patient.
So, where to start? Well, here is everything I wish I’d known – a guide that every woman, or man, with breast cancer and their partner should read…
Dr O’Riordan, pictured on her wedding day with her husband and fellow surgeon Dermot, 54, said it was important that couples talk about their sex lives when undergoing cancer treatment
Accept your body feels and works differently
Surgeons can now do amazing things. We can remove lumps, leaving hidden scars, and reshape the breast. If you need a mastectomy, we can reconstruct your breast using an implant (which is what I had) or your own tissue. But something I didn’t fully appreciate until after my own operation was that a reconstructed breast is totally numb. Mine had no feeling, so it was no longer an erogenous zone for me.
I didn’t like looking at it in the mirror, so what was my husband supposed to do with it?
When my cancer came back, I had my implant removed and being flat was even harder to adjust to. Instead of a left breast, I have several scars and radiotherapy skin damage.
It’s hard to feel sexy when I’m naked in front of my husband. He tells me I still look hot, but it took a long time to believe him.
But finally I realised that although breast cancer has robbed me of my hair, my breast and my fertility, I am still the woman he fell in love with.
What you look like naked is only a tiny part of your allure.
Night sweats mean separate duvets
If your breast cancer is sensitive to oestrogen, you’ll be given medication to lower levels in your body. These drugs, as well as chemo, bring on the menopause.
It’s much worse when you are young and it happens overnight. Hot flushes and night sweats are common. Waking up, soaked through – I thought I’d wet myself the first time it happened. My husband and I now have separate duvets and I no longer disturb my him when I throw off the covers. But you lose the intimacy of sharing a bed.
This menopause can also cause vaginal dryness and irritation and you may lose your sex drive completely.
Oestrogen is a natural lubricant and without it, sex can be uncomfortable, painful or impossible.
Start talking… when the time is right
The most important thing I’ve learned is to be open and honest with your partner. Find a neutral time, somewhere private, and tell them your fears – you’re worried it will be painful, that they don’t find you sexy or your sex drive has simply vanished.
Give them time to tell you what their concerns are, too.
They may be scared of hurting you, or they don’t know whether they should touch your scars or avoid them altogether.
Tell your medical team what’s going on
It can be scary and embarrassing talking about sex, or a lack of it, to your breast care nurse, GP or consultant. But there is a lot we can do to help. There are also menopause experts who specialise in helping women with these symptoms and side effects.
Dr Louise Newson has a brilliant website, menopausedoctor.co.uk, as does Dr Hannah Short, drhannahshort.co.uk.
Don’t be afraid to seek counselling
I experienced every guilty feeling going after my diagnosis. To my mind it was my fault if sex disappeared off the agenda.
I was angry that I’d lost my sex drive and I resented the fact I had cancer when friends didn’t.
These are the kind of feelings that can trigger anxiety and depression, even years later.
Most cancer centres have access to a counsellor specially trained by Macmillan Cancer Support.
I found this service invaluable, especially talking to someone anonymous who didn’t think I was crazy and had answers to a lot of my problems.
My counsellor helped me work out how to talk about sex in a way that wouldn’t offend or upset Dermot. It made a huge impact on both of us.
Do research, and get him to do it too
I wrote The Complete Guide To Breast Cancer, with another doctor and breast cancer patient, Trish Greenhalgh, to share everything we had learned.
But I also recommend women read Me And My Menopausal Vagina, by Jane Lewis. Get your partner to read them too so that they understand what you’re going through.
The charity Breast Cancer Care has excellent online information about getting back to sex. They also have an app called BECCA, with helpful advice from patients and experts.
I also follow two great sex experts on Twitter, @jodivineuk and @SamTalksSex who are breaking down the taboos around sex and offer lots of great advice.
I mention more on my website at liz.oriordan.co.uk.
Rediscover the joy of cuddles and date nights
IT can be very hard to get in the mood after cancer treatment. So get back to basics – try going on a first date again and spend a while cuddling on the sofa like teenagers. Take the pressure off; it might help you both reconnect.
Dermot and I had slipped into the habit of not making time for ourselves. So we started a weekly date night at the cinema. Just the two of us; no mobile phones or distractions.
We learned to have fun together again outside the bedroom, remembering why we fell in love.
If you do too, you’ll be more inclined to take it to the next step. Just spend that time trying to make each other feel good.
Practice really does make perfect…
Hormone treatment saps your sex drive so it can take much longer to become aroused, and although technically you can still have an orgasm, it’s important to explore what works for you now – at first without the pressure of your partner being there, and then together.
Training the muscles of your pelvic floor (try stopping your urine mid-flow) can make orgasm easier and more powerful. A simple online search will show you what to do, or you can ask your GP.
I advise all patients… get a bag of tricks
For many, life after breast cancer means no more spontaneous sex, especially if you have vaginal dryness. Lubricant is your saviour and I recommend the ‘YES’ range, which is organic with no added chemicals. An added bonus is that your GP can prescribe them, so you don’t have to pay – cancer patients get free prescriptions.
With no sex drive, it can take forever to get in the mood. A small vibrator can really help. And dilators can be a godsend, as they can help stretch and relax the vaginal muscles.
Look for a set that gradually gets bigger in size. I recommend the Inspire Dilator kit, which are made of soft silicone. You can buy them online and they’ll be sent in discreet packaging.
Still struggling? Medications can help
If you still struggle with dryness despite lubricants, your doctor can prescribe a topical oestrogen cream or a vaginal tablet such as Vagifem. This has been a complete game-changer for me.
And because the amount of oestrogen your body absorbs from these medications is minimal, they’re completely safe to use, even if your type of cancer is hormone-sensitive.
There has even been a trial to show that they won’t increase your risk of recurrence.
Finally, your partner might struggle to maintain an erection, especially if he is scared of hurting you. If this is the case, his doctor could prescribe a tablet like Viagra to help him.
Breast cancer survivors deserve an enjoyable and fulfilling sex life. Talk to your partner. Talk to your GP. Explore sex toy websites. It’s trial and error, but you can get your sex life back, and have fun trying.
- The Complete Guide To Breast Cancer: How To Feel Empowered And Take Control, by Professor Trisha Greenhalgh and Dr Liz O’Riordan, is published by Vermilion at £14.99.