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Sexual intimacy: the disruptive effects of cancer treatment

Having a diagnosis of breast cancer at a young age, together with chemotherapy and surgery, affects how women look at themselves – and sexual intimacy with partners

Having a diagnosis of breast cancer at a young age, together with chemotherapy and surgery, affects how women look at themselves – and sexual intimacy with partners


Picture: iStock

‘Having sex wasn’t the real issue for me – it was how I looked and felt about myself.’

When Lisa from the north of England was diagnosed with breast cancer in 2014 at the age of 26, a skewed sense of self worth was not the only thing she had to contend with.

‘As a woman, I didn’t feel attractive,' recalls Lisa. 'I still don’t feel wholly a woman. Although I’ve got a breast there, it doesn’t look how it should and how I’m used to seeing it.

‘I used to be a confident young girl. I lost my hair and put quite a lot of weight on because of the chemotherapy, which made me feel uncomfortable and not attractive at all.’

44%
of 16-24 year olds were concerned about not wanting to have sex

Hormone blockers

The former events worker says that while her husband had seen her scars, it was difficult to get back into a sexual mindset.

‘My sex life completely changed. I was on hormone blockers, which made my body think it was going through the menopause. I had zero sex drive. 

‘Sex was never a thing I thought of during treatment. It was frustrating from a relationship point of view but it was hard to keep that going when my medication took over.’

Lisa’s story highlights the importance of patients’ experiences and concerns about sex and relationships. In 2014, the charity CLIC Sargent surveyed 125 people with cancer between the ages of 16 and 24 about the impact of the disease and treatment on their sexual relationships.

Of those surveyed, 44% were concerned about not feeling in the mood for sex and 65% expressed concerns about whether a partner would still find them attractive. Furthermore, 63% reported that they would find it difficult to talk to a nurse or doctor about sex.

CLIC Sargent 

In response, CLIC Sargent has developed online resources to help increase young people’s confidence in speaking about these issues, including a video of a couple talking about their experience of sex and intimacy during cancer treatment, with advice from experts.

65%
of 16-24 year olds were concerned whether a partner would still find them attractive

Bethany Rhoten, assistant professor at Vanderbilt University School of Nursing in Nashville, Tennessee, in the US believes nurses need to pursue training opportunities to help them talk to patients about sexual intimacy during and after treatment.

‘Information is available, but body image and concerns about sexuality are often minimised in the face of a life-threatening illness like cancer,’ she explains.

‘As we get better at treating cancer and extending the life of those with the disease, issues like body image and sexuality gain greater importance for survivors.’

Openness

Professor Rhoten says training needs to occur alongside other oncology care education. ‘Nurses can create an atmosphere of openness for patients to bring up subjects they might otherwise not address.

‘Open-ended questions provide an opportunity for nurses to understand the issues most important to the patient.’

63%
of 16-24 year olds said they would find it difficult to talk to a nurse or doctor about sex

Breast Cancer Care clinical nurse specialist Grete Brauten-Smith is the charity’s lead on younger women diagnosed with breast cancer.

She advises nurses to ‘tease worries out of them’ when patients raise initial concerns, explaining that while some women are comfortable having sex while undergoing chemotherapy, others will feel ‘that’s the last thing they’ve got energy for’.

‘Hot flushes’ 

‘Women may come in and say: “I’m having hot flushes”, which could prompt you to ask what their other symptoms are.

‘You may talk about whether the patient is in a relationship, whether there are any problems, and if they are experiencing any difficulties because of the treatment,’ she suggests.

Ms Brauten-Smith sometimes encourages nurses to ask patients more directly. For instance, she says nurses should query whether patients have experienced any vaginal dryness and any problems relating to that.

‘Nurses can quickly gauge whether they’re ready to talk about it. Once you open that topic, the patient will think this nurse is willing to go there and that can be such a relief.’

But she acknowledges that not everyone is comfortable talking about sex and intimacy.

Emotional aspect

‘We must remember that breast cancer is not just a physical disease – it affects the emotional side,’ she says.

‘Having a diagnosis of breast cancer at a young age, together with chemotherapy and surgery, affects how women look at themselves and that will affect their intimacy.’

She stresses that these conversations should not be limited to when the patient is in treatment. ‘Just because the patient has finished active treatment does not mean they cannot contact their nurse,’ she explains.

‘A lot of nurses are now doing exit interviews with patients, but they have to be careful it is not a tick-box exercise. It has to be sensitively handled to encourage the woman to talk.’

Younger Women Together event

The thought of sex and intimacy can also be just as daunting for people who are not in relationships. Starting a sexual relationship may bring feelings of anxiety for patients, particularly in terms of how and when to tell someone they have had cancer.

Approaching sex and intimacy as a single woman is one of the key discussions at Breast Cancer Care’s Younger Women Together sessions. These help women between the ages of 20 and 45 years who have breast cancer to deal with intimacy problems they encounter as a result of treatment.

Aiming to reduce isolation, the events increase participants’ understanding of their breast cancer diagnosis, treatment and management and equips them with the knowledge to make decisions regarding treatment.

‘Those who deliver sex and intimacy sessions at the Younger Women Together events are healthcare professionals and therapists who have specific experience and training in breast cancer/sexual health rather than breast care nurses. The charity also consults plastic surgeons, counsellors, fertility consultants and dieticians.

The sessions are led by the women themselves and Ms Brauten-Smith says this helps them feel less isolated.

‘There are some women who’ve never discussed fears about dating in the future or about telling partners about surgery with anybody,’ she explains. ‘It’s a safe space to speak, learn, talk and experience they’re not alone.’

Ms Brauten-Smith acknowledges that while some clinical nurse specialists have a great deal of understanding about sex and intimacy, others may feel less able to discuss these issues with patients.

‘It’s important to be aware that a clinical nurse specialist will not have all the tools in the box. None of us know everything and that’s why there’s a lot of available agencies to signpost.’

Belfast City Hospital case study

Cathy McDaid, a breast care nurse specialist at Belfast City Hospital, says questionnaires provide an important means for prompting conversations around sex and intimacy. Although sexuality was always on the holistic needs assessment form (the team used the National Cancer Survivorship Initiative concerns checklist since 2012), it was ‘very rare’ for people to tick the boxes on sexuality and their partner.

However, in August 2015, the breast care nursing team updated the tool to narrow its focus to 25 concerns about the consequences of breast cancer treatment rather than the previous 56, which helped facilitate conversations on sex and intimacy. Patients now need to record the effect of their condition on their sex life in the ‘sexuality and partner’ section.

Ms McDaid says the team are consequently finding sexual intimacy raised much more frequently as a concern. ‘Having that down within the same standard of questions, such as how patients feel about their appearance, hot flushes and fatigue, normalises it,’ she explains.

Ms McDaid encourages nurses to show patients that intimacy can be established in other ways. ‘If someone doesn’t feel up to having intercourse yet, encourage patients to make time to cuddle with each other and holding each other’s hand encourages that closeness.’

Despite the challenges, Ms McDaid says it is vital to offer a safe space to talk about sex and intimacy concerns, adding: ‘Mainly it’s about raising the topic and allowing people to talk about what is worrying them.’

‘Quite a lot of times it’s practical things you can give advice on and they can be made to feel they have permission to talk about it. As nurses, we are here to give patients some reassurance.’

 

How to broach difficult conversations on sexual intimacy

Ask open-ended questions

  • Nurses can help patients bring up subjects they might otherwise not address

Ease your way into it

  • Listen carefully when patients discuss their symptoms to see if their answers open up opportunities to discuss more about their relationships and sexual health

Ask directly 

  • Query whether the patient has experienced any sexual difficulties or issues with intimacy as a result of cancer treatment

Location 

  • Ensure you have an appropriate place to talk, such as a private room

Understand your limitations and scope of practice

  •  Know where to signpost for further information and resources, as well as online community groups to provide young people with a safe space to discuss their feelings and concerns

Five common side effects of treatment for breast cancer

  1. Vaginal dryness
  2. Fertility issues
  3. Menopausal symptoms, such as hot flushes, night sweats and low libido
  4. Hair loss
  5. Body image concerns and low self-esteem

Online patient communities

Online resources

 

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