Why we need to talk about sex and cancer

Sex and cancer shouldn't only exist in separate conversations. In fact, they are very much intimately connected, often affecting each other.

But with tens of thousands of people with cancer suffering in silence with sex worries and 'rock bottom self confidence', according to new research, the problem will only grow worse.

Nearly a quarter of people (700,00) with cancer in the UK have serious concerns about sex, libido and fertility as a result of their diagnosis or treatment, the study by Macmillan and YouGov finds.

Among this group, almost two thirds of people are struggling with the physical effects of treatment on their ability to be intimate, one in three feel less confident about themselves, and more than a quarter are concerned about their appearance or desirability. For a smaller few, worries around feeling pressure to have sex or be intimate when they don't want to is causing the stress.

However, only two in five of those who want help with sex or fertility issues have had any support, leaving too many people with cancer trying to manage it all themselves.

Here, we hear from people who have overcome this very situation and the experts on why we need to talk about sex and cancer more, and how to bring it up with healthcare providers, partners and friends.

The impact of cancer on sex and intimacy

While the research shows issues around sex and fertility for those with cancer impacts both men and women, men are twice as likely as women to have serious concerns about these issues, at 33% and 15% respectively.

Dad of four Sean Baker, 55, from Croydon, was diagnosed with prostate cancer in 2018 just before he turned 50. He is now thankfully in remission, and is passionate about encouraging others to have open conversations about the impact of their diagnosis.

"After I had finished treatment, I was, of course, so happy to be alive, but I was really worried about how my diagnosis would impact my sex life," says Baker.

"I knew that the treatment I had may cause erectile dysfunction, but when the first two prescriptions from my doctor didn’t help at all, I started to feel incredibly anxious.

"I kept the conversation around sex really open with my doctor and that was so helpful for me as it meant we tried another dose of medicine, which worked wonders! A few months down the line and the erectile dysfunction was a lot better. Fair to say that that definitely boosted my mood!"

Ali Alcock, 46, from North Wales, was diagnosed with cervical cancer in April 2015 when she was in her late 30s. She is now in remission too. Not being able to open conversations about sex and relationships after her diagnosis had a huge impact on her wellbeing.

"It all started at the point of diagnosis for me. When discussing treatment options, the consultant wrongly assumed that a woman of my age – 37 at the time – who was single and had a son would be ok with having a hysterectomy. He couldn’t have been more wrong," Alcock explains.

It was her "wonderful" Macmillan nurse Jane who supported her with coming to terms with what was ahead.

"But after my hysterectomy, I felt less of a woman somehow," says Alcock. "My confidence regarding relationships was rock bottom and I had so many questions about sex but felt like I had no one to ask. It’s just not a topic people discuss. I felt very anxious.

"When I met someone new, I finally took the plunge to speak up about how I was feeling, and it changed everything. We need to be more open about this important topic and the very real impact cancer can have on people’s sex lives. It is not something to hide away from."

Why we need to talk about sex and cancer

"Cancer can impact a person’s life in many ways; their relationships, their bodies, how they are feeling and more. It can touch every part of what makes someone who they are. And we know that for many, sex and intimacy following a diagnosis is a huge concern and thousands of people with cancer are suffering in silence, causing a huge amount of stress and anxiety," says Tracey Palmer, Macmillan information and support manager at Whittington Health NHS Trust, says.

Cancer charity and Lovehoney have teamed up to break the taboo and encourage more people to have open conversations around sex, cancer and wellbeing and get any vital support or treatment needed.

"We know that many people find it hard to raise these issues with their partner or people close to them and that’s where we can come in. No question or conversation is too big, too small or too personal on our confidential support line or our online community. Nobody should face the impact of a cancer diagnosis alone; we are here every step of the way," says Palmer.

Dr Hannah Tharmalingam, national clinical adviser at Macmillan Cancer Support, adds, "Even if you feel embarrassed, remember that most healthcare professionals are used to having these conversations and you can talk to them about anything related to your sexual wellbeing before, during or after your treatment. If you would prefer to speak to someone else, they can refer you to another specialist such as a psychosexual service or a sex therapist."

How to talk about sex and cancer

Sarah Mulindwa, Lovehoney sexual health expert shares her top tips for starting the conversation with different people, which can be applied irrespective of age, gender or sexuality – cancer and sexual health concerns can affect anyone.

With healthcare providers

• If you feel comfortable, talk to your medical team about any issues or concerns you’re experiencing in relation to your sex life

• This could be anything from changes in libido or physical discomfort through to fertility concerns or what the long-lasting effects on your sexual wellbeing might be

• Consider bringing written notes: write down your concerns beforehand to ensure everything you want to talk about is covered during appointments

• Advocate for yourself: if your sexual wellbeing is a priority for you, don’t hesitate to ask for the support you need

• Being asked about any symptoms or changes to your body during follow up appointments is a perfect time to bring up any concerns about libido, physical discomfort during intimacy, or questions about fertility preservation or any other intimacy concerns

 In relationships

• Being open and honest with your partner can help you to feel less alone, as well as fostering a sense of mutual support and empathy

• This could include talking to them about your desires, fears, and necessary adjustments

• Choose the Right Moment: Find a private and comfortable setting for the conversation

• Express Your Needs: if you feel you can, be honest and straightforward about your concerns and the type of support you seek when it comes to intimacy

• Start Slowly: begin by expressing any general fears, worries or concerns this can make it easier to then discuss sex and intimacy issues

• Maintaining regular relationship routines like date nights can be a source of comfort, connection and normalcy for some people with cancer even if just at home – communicate to your partner if this is important to you

With friends

• Seeking support from trusted friends can help to lift the burden of any worry or uncertainty you are dealing with

• Sometimes it is easier to talk with someone you do not know. If you feel this way, you could consider group discussions or support groups

• Seek Empathy: Macmillan’s Online Community is a peer-support group where you can chat to others who may be going through the very same thing you are

• Messaging can often make it easier to broach heavier topics, providing a comfortable avenue for discussing sensitive issues

Macmillan is there for anything people with cancer need to ask about sex and intimacy. Visit its new sex and cancer hub, use the free and confidential support line (open seven days a week), or chat with others who may be going through the same thing you are via the online community.

• Read more: When you should get checked for certain cancer types (Yahoo Life UK, 6-min read)

• Read more: Scientists researching a cure for pancreatic cancer reveal 'breakthrough' (Yahoo Life UK, 4-min read)

• Read more: Struggling to orgasm? Here's why, according to experts (Yahoo Life UK, 6-min read)

Watch: Paul Burrell emotional as he reveals cancer diagnosis on TV