Analysis

Sex and intimacy after cancer treatment: how to provide support and information

Taboos over talking about intimacy and sex need to be overcome so people affected by cancer treatment can receive the help they need, and nurses need to help normalise such conversations

    Taboos over talking about intimacy and sex need to be overcome so people affected by cancer treatment can receive the help they need, and nurses need to help normalise such conversations

    • People with cancer should be encouraged to talk about the effect of treatment on their sex life
    • Patients may see such problems as embarrassing or less important than cancer treatment
    • Nurses should be able to offer support and information on treatment-related difficulties
    Sex and cancer
    Picture: iStock

    Cancer and its treatment can have a profound effect on people's intimate relationships and their sex lives.

    However, they may struggle to broach the subject due to embarrassment, or feel it is much less important than the treatment for their cancer.

    A survey of more than 1,000 women diagnosed with breast cancer over the past decade found that nearly half, or 46%, had experienced sexual difficulties including loss of libido and vaginal dryness as a result of treatment.

    81%

    of men treated for prostate cancer in the UK described their sexual function as poor or very poor
    Source: Prostate Cancer UK

    Three quarters said they were not warned about the potential impact of the treatment on sex and intimacy, according to the survey carried out for Breast Cancer Now, published in October 2019.

    Why changes to people’s sex lives are important

    These findings are supported by a 2016 review of international literature that suggests cancer patients’ needs with regard to sexual health are often unmet, particularly those of women.

    The review of 29 studies found that only 50% of patients had any discussion about the possible effects of treatment on their sexual function, with a breakdown showing this was 60% for men and 28% for women.

    Picture of Sophie Smith, a specialist nurse at Prostate Cancer UK. This article discusses taboos over intimacy and sex that may prevent people affected by cancer treatment from receiving the help they need.
    Sophie Smith

    Sexuality is the feelings and characteristics that make up someone’s sexual identity, Macmillan Cancer Support says. They are personal, unique and fundamental to who a person is and how they feel.

    Nurses should ask cancer patients if they have sexual problems

    For many people, any changes in their sexuality will be temporary. But patients may need to get used to permanent changes and find new ways of giving and receiving sexual pleasure. With support and clear communication, patients will still be able to enjoy a fulfilling sex life, the charity says.

    Prostate Cancer UK specialist nurse Sophie Smith says nurses working in cancer should always ask patients if they are having or are worried about having problems with sex.

    The majority of men receiving treatment for prostate cancer will experience changes to their sex lives such as being unable to get erections, or the same erections as previously, changes in the size of their penis and loss of libido.

    ‘Working clinically I always felt it was my responsibility to ask the question – if a nurse doesn’t ask you can’t expect patients to talk about it,’ says Ms Smith.

    ‘Often, unless you have built a rapport with people, they will not be happy to speak about these changes’

    Sophie Smith, specialist nurse at Prostate Cancer UK

    ‘They have a lot of other things going on, and they may feel it is not something they should be talking about or worrying about when they have cancer.

    ‘Some people will speak openly, but often unless you have built a rapport with people they will not be happy to speak about these changes,’ she adds.

    Asking about any sexual or intimacy problems is essential, expert nurses agree.

    A strategy that can help nurses start a conversation is the PLISSIT model, which was developed in the 1970s to outline different levels of clinical support or intervention for sexual difficulties.

    How the PLISSIT model works

    There are four levels of intervention:

    Permission – the healthcare professional creates an opportunity for the patient to discuss sexual health concerns through use of open-ended questions

    Limited Information – involves giving targeted information about treatment-related sexual concerns raised by patients

    Specific Suggestions – based on an evaluation of the specific information and support needs of the person or couple affected by cancer

    Intensive Therapy – usually offered by psychosexual or psychological therapists and involves onward referral for more in-depth support if necessary

    Isabel White, a cancer nurse and psychosexual therapist, who is quality lead at Maggie’s Centres cancer support charity, says all nurses working in cancer care should be supported to be comfortable with the first two PLISSIT levels of encouraging a conversation about treatment-related sexual concerns and being able to give brief targeted information.

    She suggests that nurses start with a fact-based statement such as: ‘We know that many women on tamoxifen notice a difference in their usual level of sexual interest’ or: ‘Many men who have had surgery or radiotherapy for rectal cancer notice it can have an effect on their ability to have or keep an erection.’

    What help can nurses provide?

    Then ask a follow-on question such as: ‘Have you noticed or are you concerned about anything like this?’ If the patient mentions something that could be connected to their sexual relationship this should prompt the nurse to ask a sensitively worded open-ended question to explore these concerns.

    All cancer nurses should be able to provide support and information when discussing illness or treatment-related sexual difficulties with patients, Dr White says.

    55%

    of men with prostate cancer were not offered any help with sexual dysfunction
    Source: Prostate Cancer UK

    ‘What stops many nurses asking about sexual concerns is the fear that they do not know how to respond to the person or couple’s question or know about local sources of help and specialist expertise. This is where some local networking comes in.’

    An example of simple advice that can be offered is the use of nonhormonal intimate lubricants and vaginal moisturisers by women with vaginal dryness to reduce sexual pain.

    Sources of written information and reliable websites

    ‘Most patients do not need access to psychosexual therapy. Oncology nurses can help people to explore their concerns and provide timely sources of information and offer guidance about local and national specialist services,’ says Dr White.

    ‘Find out what services are available locally and about their referral criteria’

    Isabel White, quality lead at Maggie’s Centres

    There are excellent sources of written information and reliable websites in both oncology and sex and relationship services, she says.

    For a general overview on sex and cancer, booklets by Macmillan Cancer Support are recommended.

    Services available for people with treatment-related sexual difficulties

    Nurses can also direct patients to charities focused on specific cancers, such as Prostate Cancer UK and Breast Cancer Now, for more specific written guidance and telephone helplines for patients or partners to call.

    Shine Cancer Support has blogs and podcasts on cancer for people in their twenties to forties, including the impact on sex, dating and fertility.

    Dr White says nurses will find it helpful to know what services are available for people with treatment-related sexual difficulties.

    Cancer nurse and psychosexual therapist Isabel White says nurses working in cancer care should be supported to be comfortable with conversations about treatment-related sexual concerns and being able to give brief targeted information
    Cancer nurse and psychosexual therapist Isabel White says nurses working in cancer care should be comfortable with conversations about sexuality and cancer. Picture: Nathan Clarke

    ‘Find out what services are available locally and about their referral criteria,’ she says. ‘Find out if there is a local erectile dysfunction service and where it is based, which is generally in the urology department, or a local women’s health or specialist menopause clinic.’

    She adds: ‘Maggie’s Centres, if there is one near your local cancer centre or unit, can also be a good place to direct people as we focus on psychosocial support for people affected by cancer, including support for partners and family members.

    Maggie’s Centres offer an evidence-based programme of support delivered through support groups, short psycho-educational courses and individual or group therapy.’

    Particular needs regarding sexual consequences of cancer treatment

    Access to NHS psychosexual therapy can be patchy, so people may choose to seek it privately.

    Bear in mind that some groups, including some lesbian, gay, bisexual and trans people as well as some cultures and religions, may have particular needs or concerns regarding the sexual consequences of cancer treatment.

    Dr White says that for gay men, for example, anal cancer treatment can have a significant impact on their sex lives. Gay or bisexual men who engage in anal sex need a relatively strong erection, so lesser levels of erectile dysfunction can have a significant effect on their sexual expression.

    Consider strategies to support and inform people with cultural sensitivities

    When it comes to cultural sensitivities, it remains important that people are adequately informed about treatment effects, Dr White explains.

    ‘If I felt the person was finding it difficult to discuss this subject I would begin by offering written patient information about treatment-related sexual changes, direct them to the relevant section, and say I am always available to answer any subsequent questions.

    ‘We need to consider strategies to support and inform people while enabling them and ourselves to manage potential embarrassment,’ she says.

    How cancer affects people’s sex lives

    Cancer and its treatment can have a wide and varied impact on patients’ sex lives. This can include changes physically and emotionally that can cause problems with sex, intimacy and relationships.

    Chemotherapy can have many effects, including leaving people feeling tired, sick and with a sore mouth.

    Surgery can reduce sensation to an area, affect body image or alter vaginal anatomy or erectile function.

    Difficult to cope with emotionally

    Some treatment can cause women to have an early menopause. Surgery to remove the ovaries, radiotherapy to the pelvis, endocrine therapy and chemotherapy can all induce an early menopause which can be permanent.

    This can cause a loss of libido and vaginal dryness, and can be difficult to cope with emotionally, Cancer Research UK says.

    Pelvic surgery, endocrine and anti-androgen therapy, and pelvic radiation can all cause physical problems and difficulties with sexual confidence and expression.

    Changes to sex lives and intimacy can also be difficult for partners. Cancer Research UK recommends that patients be encouraged to talk to their partners about changes they are undergoing and how they feel.

    ‘If you are in a relationship and try to keep your concerns to yourself, your behaviour may confuse your partner. They may feel rejected or think you no longer love them or feel attracted to them,’ the charity says.

    When people stop having sex it often affects other types of intimacy. Someone with cancer may avoid hugging and kissing because they worry that it could arouse their partner and then upset them when it doesn’t lead to sex. Sometimes people with cancer avoid physical contact with their partner because they are unhappy with changes to their body.

    Speaking to their partner about this can help both of them adjust to the new situation, the charity says.

    46%

    of women with breast cancer have sexual difficulties
    Source: Breast Cancer Now

    Men and women are advised to use reliable contraception while having chemotherapy and after they have had it, as the drugs could harm a developing foetus, Cancer Research UK says.

    Because it is not known for sure whether chemotherapy drugs can be passed on through semen or secretions from the vagina, some doctors advise using a barrier method, such as condoms, femidoms or dental dams, if having sex during treatment. This applies to vaginal, anal or oral sex.

    Normalise clinical conversations abut sex during and after cancer

    Generally, doctors advise a barrier method only for the time a patient is having the treatment and for about a week after treatment, Cancer Research UK says.

    Discussing sex during and after cancer needs to become a more normal part of clinical conversations, says Breast Cancer Now clinical nurse specialist Rachel Rawson.

    ‘Women often use the word “trivial” when they talk to us about changes in sex and intimacy, how they don’t want to bother their nurse or GP’

    Rachel Rawson, clinical nurse specialist at Breast Cancer Now

    Phone lines and peer support forums run by charities can be places where patients find it easier to talk.

    Breast Cancer Now has launched a partnership with retailer Ann Summers to help start the conversation about sex, intimacy and breast cancer.

    ‘Women often use the word “trivial” when they talk to us about changes in sex and intimacy, how they don’t want to bother their nurse or GP,’ says Ms Rawson.

    Sex and intimacy is an important part of life and recovery

    ‘They seem to be able to talk on the help line because it is anonymous, and the nurses taking the calls are very skilled at being able to work through this. Sex and intimacy is an important part of life and recovery, and mental and physical well-being.

    ‘When we say this to women they seem to feel relieved because they are struggling and missing that part of life.’

    The conversation needs to be normalised, Ms Rawson says. ‘It should be discussed freely and not be a taboo.’


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