LGBTQIA+ people and cancer

Research shows that as an LGBTQI+ person diagnosed with cancer you may have to deal with a number of unique challenges, including:

• health professionals making assumptions about your sexual orientation, gender and sex characteristics, which can make you feel invisible
• anxiety about coming out as LGBTQI+ and fear of negative reactions from health professionals
• higher levels of depression and anxiety because of a history of marginalisation, violence, stigma, exclusion and discrimination (sometimes called minority stress)
• difficulty having your partner/s or other significant people recognised as your family
• less or no support from your family of origin
• little or no LGBTQI+ specific cancer information or support
• lack of knowledge among health professionals about issues specific to LGBTQI+ people.

Screening is organised testing to find cancer before any symptoms appear. Finding cancer early and when it hasn’t spread often makes it easier to treat. In  Australia, there are screening programs for breast, cervical and bowel cancer. Most people who are in a certain age group and who have a Medicare card, will receive an invitation in the mail to get screened.

LGBTQI+ people may face several barriers to screening.

Ask your doctor what screening tests are right for your body. It is now possible to collect your own sample for the cervical screening test. This needs to be done at the doctor’s office. For more information on screening, visit the Can We or Trans Hub websites.

The causes of many cancers are unknown, but some factors may increase the risk if you’re LGBTQI+. Risk factors for intersex people depend on their specific variation. Cancer risk has often been used as a reason for medical treatment of intersex people during childhood.

Delaying or avoiding cancer screening – Research shows that many LGBTQI+ people delay or avoid screening. This may be because they think mammograms or cervical screening are not for them because of who they have sex with. Trans people may find screening uncomfortable and upsetting. Trans, gender-diverse and intersex people may not receive appropriate screening reminders. Missing screening tests may mean cancer is diagnosed at a later stage when it is harder to treat.

Higher risk for smoking- and alcohol-related cancers – Studies show that there are higher rates of smoking and drinking alcohol among some LGBTQI+ people, often because of minority stress. These factors increase the risk of several cancers including breast, mouth, and bowel cancer. Smoking also increases the risk of lung and cervical cancers.

Higher risk of HPV (human papillomavirus) – This very common sexually transmitted infection causes many types of cancer, including cervical, anal, throat  (oropharyngeal), penile, vulvar and vaginal. HPV can be passed on sexually, including by fingers and oral sex, or through sharing sex toys. The HPV vaccine can  protect against the virus. For more information, visit the HPV Vaccine and The Bottom Line websites.

Living with HIV – Living with HIV/AIDS may make you more likely to develop some cancers. These are known as AIDS-defining cancers and include Kaposi sarcoma, aggressive B-cell non-Hodgkin lymphoma and cervical cancer. Some cancers are common in people living with HIV but are classified as non-AIDS-defining. They include anal, liver, oral cavity and pharynx and lung cancers, and Hodgkin lymphoma.

Lower rates of pregnancy – Pregnancy before age 30, breastfeeding and using oral contraceptives may all offer some protection from breast cancer and  gynaecological cancers. Lesbian, bisexual and trans people are statistically less likely than cisgender heterosexual women to have a child before age 30. If you  haven’t had children, you may not have breastfed or had a break in your menstrual cycle.

Knowing more about you and how your past experiences have affected your health, including issues around past trauma, sexuality, fertility and carer support, can help your cancer care team provide safe care that is appropriate to your situation. It also makes it easier to recognise and include same-gender partners.

You deserve cancer care that meets your needs. Person-centred care is care that treats you in the way you’d like to be treated and listens to your  needs, preferences and values, as well as the needs of your family and carers. It means that you are an equal partner with your health care provider in planning your treatment and ongoing care (known as shared decision-making).

As part of person-centred care, it is important you feel comfortable and confident with your cancer care team. However, research shows that many LGBTQI+ people do not disclose their sexual orientation, gender or sex characteristics to health professionals for fear of discrimination or harassment.

Many health professionals are experienced in talking about health issues confidentially. If the information is not already on your medical records and you think it is relevant to your cancer care, you may want to tell them about your:

• sexual orientation
• gender
• pronouns
• variations of sex characteristics
• medical history such as past surgeries, being on hormone blockers, hormone replacement therapy or taking genderaffirming hormones
• concerns about preserving fertility
• concerns about sex and intimacy
• any history of trauma, including medical trauma.

You may be reluctant to disclose these details, especially if previous bad experiences have affected your trust in health professionals or you are not “out” in all areas of your life. But being open and honest with your cancer care team:

• helps them consider all possibilities when trying to diagnose the cause of your symptoms (such as ovarian cancer in a trans man)
• ensures they have all the information they need to offer informed and safe care for you
• means they can connect you with support services that are right for you and your family.

Ultimately, it is up to you to decide how much information you share with others. You may choose to tell only health professionals you see regularly for treatment or check-ups. 

In Australia, everyone has the right to safe and competent health care; the right to be free from unlawful discrimination; the right to accept or refuse treatment; and the right to privacy and confidentiality.

This means your health providers should:

• respect your body, sexual orientation and gender
• respect your partner/s and family
• listen to and respect your treatment goals
• respond to your care needs, preferences and values
• involve you in decisions about your treatment and ongoing care
• only collect or disclose your health information to others with your consent, or as required by law.

After a diagnosis of cancer, you need to make many decisions. To help you get the best outcome, it is important that you take an active role in your care and feel able to ask questions.

If you are concerned about the security of your health information, talk to your health provider or ask to see a copy of their privacy policy. For more information, visit the Office of the Australian Information Commissioner website.

Download our booklet ‘Cancer Care and Your Rights’

Your family may include your partner, children, chosen family, or family of origin.

The Carer Recognition Act 2010 (Commonwealth) states that all carers have the same rights, regardless of sexuality or sex. All state and territory governments have also passed their own Act and policies. This means that when carers access services and are at work, they have the right to:

• be treated with respect and considered as a partner by healthcare workers or providers
• privacy and confidentiality
• not be discriminated against at work because they are a carer
• ask for flexible working arrangements
• take leave when caring for family or household members.

Partners or carers of LGBTQI+ people may face discrimination or lack of recognition of their relationship. Your cancer care team may assume a partner is a friend and exclude them from discussions and decisions about your care, and instead talk or look to your family of origin.

All people who are married or live together as a de facto couple have the same rights. This means your spouse or partner/s can be involved in  decisions about your treatment. In Australia, the term next of kin means a person’s spouse, domestic partner or closest living relative who is over 18 years of age.

LGBTQI+ friendly health services create an environment that feels safe and is supportive, respectful and non-judgemental. They don’t make  assumptions about pronouns, your body, partners and families of choice. This is known as culturally safe care.

Connecting with a health service that focuses on the needs of LGBTQI+ people will mean you can trust them to support you. They should include anyone you wish to be part of your care plan, including your partner/s, family or chosen family.

Where you live might affect availability of LGBTQI+ friendly health services. Finding services that are welcoming and inclusive may be more difficult in regional and rural areas. You have the right to go somewhere else if you don’t feel comfortable with the service.

How to spot an LGBTQI+ friendly service

Look for signs of inclusion – These can include LGBTQI+ flags, rainbow ticks, posters and photos or statements about the service’s commitment to LGBTQI+ communities. You may find these on the service’s website or in their window or waiting rooms.

Find out about their experience and policies – Call or email the service to ask if they regularly see LGBTQI+ people and have an anti-discrimination policy. You could ask if any of their staff are LGBTQI+. It may be easier for a friend or family member to ask these questions.

Ask for recommendations – Your friends may know of services that are LGBTQI+ friendly. Ask what they liked and didn’t like. If you have an LGBTQI+ friendly GP, ask them to refer you to a supportive cancer specialist.

Use DocDir – This website lists doctors and mental health professionals who are welcoming and safe for LGBTQI+ communities, and knowledgeable about their unique health needs and concerns. Visit Doc Dir for more information.

Check forms and website – Before your appointment, check whether intake forms ask about sexual orientation, gender and intersex variations, and pronouns. Check the website for inclusive language and details about training or accreditation.

Trust your judgement – Sometimes you might just have a feeling about whether a health professional or service will be right for you. It’s okay to trust your instincts.

Finding health professionals you trust is important at all stages, from diagnosis and treatment to follow-up care. You shouldn’t miss out on  treatments, help with side effects, or follow-up appointments because you’ve had a bad experience in the past.

You may feel that everything is happening too fast and that you don’t have the time to get a second opinion. Check with your cancer specialist how soon treatment should begin and how much time you have to make decisions. You can get a second opinion or change your doctor even if you have started treatment.

If you are treated as a public patient in a public hospital, you will be seen by the specialist/s appointed by the hospital. If you have concerns, you may be able to talk to the head of the department, a patient representative or a patient advocate. Some hospitals have an LGBTQI+ patient navigator. This person provides culturally-safe support to LGBTQI+ people and advises health professionals about inclusive care. Look for their details on the hospital’s website. To find organisations that may help you navigate the health system as an LGBTQI+ person, visit QLife.

You have the right to make a complaint about any aspect of your health care. This applies whether you are treated in a public or private hospital or treatment centre, or if you see a practitioner in a private clinic. You can usually find details about the complaints process on the health care facility’s website. You can also check with the cancer care coordinator, nursing unit manager or social worker, or one of the nurses looking after you. If you are unhappy about the ethical or professional conduct of a health service provider, you can contact the health complaints organisation in your state or territory.

Most people going through cancer find it helpful to have support from others. This can include your family, friends or wider community. You might lean on your partner/s or chosen family for support and comfort, particularly if you have limited or no contact with your family of origin. Not everyone feels they need support from others; some people are happy to manage alone.

Ways to find support include:

• Speak to your general practitioner (GP), social worker, psychologist and other health professionals. They can link you with local services.
• Visit QLife or call them on 1800 184 527 to connect with others in a safe space.
• Use the member directory compiled by LGBTIQ+ Health Australia to find good sources of support. Visit lgbtiqhealth.org.au.
• Chat with other young people aged 12–25 diagnosed with cancer at Canteen Connect.
• Call Cancer Council 13 11 20 or visit our Online Community.
• Get practical and financial assistance.

Download our booklet ‘Emotions and Cancer’

A diagnosis of cancer can be difficult for any person to deal with. Research has shown that the outcomes of cancer and its treatment can be different for LGBTQI+ people.

After a cancer diagnosis and throughout treatment, it’s common to feel a range of strong emotions including anger, fear, anxiety, sadness, grief and resentment. Research shows that LGBTQI+ people have a greater risk of mental and emotional distress after a cancer diagnosis for several reasons. You may feel anxious about coming out to health professionals, fear being discriminated against because of your sexual orientation, gender or intersex variation, or worry about how cancer and its treatment will affect your identity or relationships.

Some people have faced stigma and shame for being LGBTQI+, and may blame themselves for getting cancer or feel judged by others. It’s natural to feel vulnerable while having cancer treatment. If you are distressed, anxious or depressed, appropriate support and information is available.

Dealing with feelings of sadness

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you  pleasure, you may be experiencing depression. This is quite common after a cancer diagnosis.

Everyone has their own way of coping with their emotions. There is no right or wrong way. It is important to give yourself, and those around you, time to deal with the strong emotions that cancer can cause. For support, call Cancer Council 13 11 20. People aged 12–25 can also call Canteen on
1800 835 932.

If you think you may be depressed, talk to your GP, because counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. Cancer Council SA also runs a free counselling program.

To connect with LGBTI peer support, visit QLife or call them on 1800 184 527. For information about coping with depression and anxiety, visit Beyond Blue or call them on 1300 22 4636. For 24-hour crisis support, visit Lifeline or call them on 13 11 14.

Download our booklet ‘Emotions and Cancer’

As well as their sexual orientation, gender and sex characteristics, each person is shaped by their age, race, language, culture, spirituality, disability, education, relationships and financial situation, plus where they live and any previous experiences with the health system.

These factors can overlap to affect health and wellbeing, as well as cancer care. Aside from discrimination for being LGBTQI+, some people may also have had to deal with ageism, sexism, racism or disability discrimination. Other people may find it difficult to merge different aspects of their identity (e.g. being young, trans) or work out how to communicate their needs to health services.

Some LGBTQI+ communities may have specific experiences that affect their health and wellbeing. Examples include:

• transgender and gender-diverse people – are less likely to access mainstream services because of transphobic attitudes, often have past experiences of misgendering and difficulties getting gender-affirming treatment
• intersex people – may have past negative experiences with health professionals, including prior surgery to make them “fit” society’s idea of what it is to be male or female, having had medically unnecessary surgery as a child without their consent, or dealing with health professionals’ lack of  knowledge about intersex variations
• young people – may have higher rates of distress because of being bullied at school, rejected by family members, or still being in the process of coming out
• older people – would have likely grown up at a time when being homosexual was considered an illness or a crime and may have experienced  discrimination, family rejection and social isolation
• Aboriginal and Torres Strait Islander people – brother boys or sister girls may face added discrimination from being both LGBTQI+ and Aboriginal or Torres Strait Islander (from the wider community, their own community, or both)
• culturally and linguistically diverse people and refugees – may face discrimination from within their community as well as the LGBTQI+ communities, leading to feelings of stigma and shame
• people with disability – may face discrimination from being both LGBTQI+ and a person with disability, which may lead to difficulties accessing  services and having their sexual orientation, sexual needs or gender recognised
• people living in regional or rural areas – may be more socially isolated, less supported to come out, and have less access to LGBTQI+ specific services.

Some LGBTQI+ people have experienced discrimination because of their sexual orientation, gender or intersex variation, and fear being discriminated against during their cancer care.

Discrimination can take many forms, such as inappropriate comments, receiving a lesser standard of care, and excluding your partner/s from  discussions or your hospital room. These types of behaviour can affect your physical and mental health and are against the law in Australia.

At the time of the cancer diagnosis, you may or may not have come out as LGBTQI+, or you may be out to some of your friends, family and contacts  but not others. Some people want to be out to their cancer care team, others feel it is not important, and some may not have a choice because information about their body is already in their medical records.

Choosing to come out to your cancer care team may make it easier for you to discuss your needs, preferences and values, and can help ensure you receive culturally safe care. It also means that your treatment team can recommend the most appropriate treatments for you, give you relevant information and connect you to LGBTQI+ support groups.

Whether you feel safe coming out to your cancer care team may depend on whether you’re still questioning or exploring your identity, your past  experiences of discrimination and prejudice, and whether you have been mistreated by other people after disclosing your sexual orientation, gender or intersex variation. It may also be influenced by how you felt when you came out to family and friends.

The reality of having cancer treatment is that you are asked to repeat your cancer experience multiple times with multiple doctors. You also need to decide whether to share your sexual orientation, gender or intersex variation with each health professional you meet. Coming out is a process, and it’s okay to come out slowly and when you feel ready. This can be stressful and emotionally draining, and you may be worried about how your health  professionals will react.

Benefits of coming out

• You don’t have to hide who you are and can be yourself.
• You may be more satisfied with your cancer care and feel that it better meets your needs.
• Your partner/s (if you have them) are more likely to be recognised and included.
• It makes it easier to talk about how treatment affects sex and intimacy.
• Your treatment team can tailor information for you.
• You will be less likely to have your cancer overlooked.

Fears about coming out

• Fear of negative reactions and being made to feel unsafe.
• Worry about receiving discriminatory or a lesser standard of care.
• Anxiety about having to come out multiple times.
• Fear of being alienated from your family at a time of need.
• Concerns about potential breach of confidentiality.

When you may not have a choice

Sometimes it may be medically necessary to share information with your cancer care team, so they have the information they need to make a  diagnosis or recommend treatment. This could include which reproductive organs you were born with, whether you have an intersex variation, or whether any sex characteristics have changed over your life.

People with an intersex variation may not have a choice about how much to reveal to their cancer care team if these details are listed on their medical records, and you may find this upsetting. However, you may want to share your preferred terms for body parts and discuss how your intersex variation will impact your cancer care.

You can work with your doctors and treatment team to ensure your information is shared and discussed with respect, and that you are not outed or discriminated against.

What if I’m not out?

You may not be out to all your family and friends, and don’t want your cancer care team to share personal information with others. If you decide to come out to your cancer care team, they are legally required to keep your health information private and generally can’t share it without your  permission. If you are worried about being outed, it can be helpful to let your cancer care team know.

How to come out to your health professionals

You deserve to be treated with respect by all the health professionals who look after you. If you find the thought of disclosing your sexual orientation, gender or intersex variation stressful, some of the following tips and suggestions may be helpful to you.

Decide beforehand – Before your appointment, think about how much information you want to share and who you want to share it with. Prepare  some notes so you don’t forget anything.

Practise – You may feel more confident talking to your health professional if you practise what you want to say with your partner/s, family and  friends.

Have someone with you – Consider having a support person, such as a partner, family member or close friend, with you to help with the discussion  and to provide support. They can also help you debrief and provide assistance with making a complaint if you receive a negative reaction. If you don’t feel safe, you can choose to leave the room.

Do it in writing – If you’re not a confident speaker, write down what you want to say to your health professionals. You can also ask your GP to include information about you in their referral letter to other specialists, such as your sexual orientation, intersex variation, pronouns or preferred name.

Ask for privacy – If you’re in a ward or open area, ask to speak in a quiet, private place where you won’t be overheard.

Communicate your pronouns – Consider including your pronouns when you introduce yourself. You could say “My name is Parker Jones and I use  they/them pronouns”. If you are misgendered, you could provide a simple correction such as “Oh, I use they/them pronouns, thanks.” Wearing a pronoun badge is another way to remind people of your pronouns.

Introduce your partner/s – If you have a partner or partners, encourage them to come to your appointments. This lets your doctor know who’s  important to you. Before your first appointment, it’s okay to phone or email your doctor to find out if they are LGBTQI+ friendly. You could say, “My wife will attend the appointment with me, we are both women, just so you know.”

Communication aids  – You can use the Genders, Bodies and Relationships Passport to make telling your health professionals about your gender,  body and relationships easier. Visit LGBTIQ+ Health Australia to order a copy.

Seek support – Visit QLife, a national peer support and referral service for LGBTI people. You can also call them on 1800 184 527.

Surgery to treat some types of cancer may mean removing a part of the body that affects how you look. For some, the surgery affirms their gender. After surgery, you may choose to live with your new body shape, wear a prosthesis or have a reconstruction. Only you can decide what feels right for you.

Loss of a breast – Treatment for breast cancer may include breast conserving surgery (removing part of a breast) or a mastectomy (removing one or both breasts). Having a mastectomy is different from top surgery.

After a mastectomy, you may choose to have a reconstruction or “go flat”. Some people who go flat, decide to have the area decorated with a tattoo. This can be to cover scars or to help people feel that they are in control of their body and how they express themselves.

What you decide may depend on whether the surgery affirms your gender, and whether the changes mean your body aligns with how you feel it should be. You may feel that the treatment team assumes that you will want a reconstruction after a mastectomy. Talk to the team about your goals for treatment so they can work out the best options for you.

Visit Breast Cancer Network Australia for more information on body image and gender identity

Loss of the gynaecological organs – If the ovaries, uterus or cervix are removed, this can affect how you experience sexual intimacy.

Loss of a testicle – Some people who have had a testicle removed, may have less confidence and feel less sexually desirable. For cisgender men, the loss of a testicle may make them feel less masculine.

Some people adjust quickly to having one testicle, while others find that it takes some time. If you are self-conscious about how your scrotum looks, you may want to consider having an artificial testicle (called a prosthesis) inserted.

Loss of the prostate – During surgery, the tubes from the testicles are sealed and the prostate and seminal vesicles are removed. This means semen is no longer ejaculated during orgasm. The pleasure from rubbing or stimulating the prostate during anal sex will also be lost.

Shortening or loss of the penis – After treatment for prostate cancer, your penis may be a bit shorter when not erect. After treatment for cancer of the penis, the penis may be removed (penectomy). If the size of your penis is affected, you might avoid intimacy for fear of rejection. Your health care team can recommend a range of methods to change how the penis looks.

Download the Prostate Cancer Foundation of Australia’s booklet ‘Understanding Prostate cancer for LGBTIQA+ people’

Some cancer treatments may cause you to lose weight. This may be because you lose your appetite, or you have taste changes or trouble swallowing. If you are taking medicines such as steroids or androgen deprivation therapy (ADT), these may cause you to put on weight.

Everyone responds differently to changes in weight. Your reaction may depend on your age, and how important your appearance is to you. For some, their changed body shape may feel more affirming, but others may feel less comfortable about their body after changes to their weight.

Radiation therapy can irritate the lining of the bowel and rectum. Symptoms may include passing smaller, more frequent bowel movements (faeces, also called stools or poo), needing to get to the toilet more quickly, or feeling that you can’t completely empty the bowel. These changes may mean that you avoid going out for fear of having an accident, or you avoid sexual activity. Talk to your treatment team if you are finding it hard to cope with this side effect.

Hair loss or hair thinning is a common side effect of some cancer treatments, including chemotherapy and radiation therapy. If you experience hair loss, you may have a range of different emotions such as anger, anxiety and feeling low or depressed. Hair loss can make you feel self-conscious about your appearance and be a constant reminder that you have cancer.

For some LGBTQI+ people, head and body hair can be an important part of how they express their sexual orientation and gender. It can be a way of signalling that they have rejected gendered expectations of how they should look, or beards or long hair may help affirm their identity. Losing hair because of cancer treatment can challenge this expression of identity and self-image. For others, short hair after treatment may make them feel more visible as an LGBTQI+ person.

Everyone deals with hair loss differently. You might want to wear wigs, scarves and hats, or you might feel comfortable leaving your head bare. You may want to take control of the hair loss by shaving your head before treatment.

Download our fact sheet ‘Hair Loss’

Some cancers depend on hormones to grow (e.g. oestrogen may help breast cancer to grow, testosterone may help prostate cancer to grow).

If you are diagnosed with a hormone dependent cancer and are taking gender-affirming hormones, your doctor may suggest adjusting your treatment.  You may find this difficult to do, particularly if how you look changes. This is known as gender dysphoria. If this makes you feel anxious or depressed, it
may help to talk to your doctor or call QLife on 1800 184 527.

Scars – Surgery or radiation therapy can cause scarring. Scars usually fade over time and are harder to see. Sometimes people worry because a scar looks or feels red, tight and uncomfortable. This may make you feel self-conscious, even if others can’t see it. Ask your doctor about creams that may help the scar heal and become lighter in colour. In some cases, you may choose to have surgery to make a scar less noticeable.

Skin changes – Itchy, red and dry skin can be a side effect of some targeted therapy, immunotherapy and hormone therapy drugs. Radiation therapy can also cause skin changes. These changes can make you feel self-conscious.

Lymphoedema – If the surgeon removes lymph nodes from your armpit, groin or pelvic area, the lymph fluid may no longer drain properly, and your arm or leg may swell. This is called lymphoedema. Although lymphoedema may be permanent, the pain it causes can usually be managed. Ask a lymphoedema practitioner whether wearing a compression garment would help.

Download our fact sheet ‘Understanding Lymphoedema’

Stoma – Occasionally, surgery for bowel, anal, ovarian or bladder cancer means you need a temporary or permanent opening in the body (stoma). For a bowel stoma, a new opening in the abdomen allows bowel movements (faeces, also called stools or poo) to empty into a bag that sticks onto the skin of your abdomen. For a bladder stoma, a new opening collects and stores urine (pee or wee). Getting used to the stoma takes time. You may feel self-conscious about having a stoma, and worry that it can be seen under clothing, but it usually isn’t noticeable.

See our booklets on bowel cancer and bladder cancer for more information.

Ways to adjust to changes in appearance

• Keep in mind that body image is based on a mix of emotional and physical factors, not just on a body part or physical characteristic.
• Exercise regularly. It can help improve body image, quality of life, and reduce the risk of cancer coming back. Consider seeing an exercise professional for a tailored exercise program.
• Wear accessories and clothes that make you feel good or highlight your favourite features.
• Look at your “new” body in the mirror to get used to how it has changed.
• Talk to your GP or a psychologist if you have trouble adjusting to the changes to your body.
• Connect with people on social media who have similar experiences. They may have suggestions on how to adapt to your changing appearance.
• Ask your doctor about reconstructive surgery, prosthetic devices and/or cosmetic solutions. These are not for everyone but may help improve self-esteem and body image.

Download our booklet ‘Living Well After Cancer’

Side effects will vary from person to person, and depend on the type of treatment and medicines you have. Some people have no side effects, while others have many.

Changes to sex drive or desire – Your libido might change because of tiredness, pain, anxiety, changes in hormone levels, and loss of confidence and self-esteem. For some people, libido may return to your usual levels after treatment ends, but for others, low libido may continue. Hormones can also change with age, and it’s common for libido to decrease as you get older. Even if you feel like having sex, you might feel anxious about your partner/s seeing how your body has changed.

Pain during sex – Radiation therapy to the pelvic area or rectum may make sex painful. This usually improves after treatment ends.

Incontinence – Trouble controlling the flow of urine (urinary incontinence) or flow of faeces (faecal incontinence) is a common side effect of treatment for cancer of the prostate, bladder, bowel, uterus, vulva, vagina and penis. This may be temporary or permanent. Having bladder or bowel issues can be embarrassing and you may worry about having accidents or leaking during sexual activity. You can use a sex blanket, cover sheets or have sex in wet areas like a shower.

Weak pelvic floor muscles can affect bladder and bowel control. The hospital continence nurse or physiotherapist can suggest exercises to strengthen the pelvic floor muscles and manage urinary symptoms. Start these exercises before treatment and continue to do them regularly after treatment.

Leaking urine at orgasm – After surgery for prostate or vulvar cancer, you might leak a small amount of urine when having an orgasm. This is usually temporary but is sometimes ongoing. You may feel embarrassed and nervous at the thought of leaking urine during oral sex and/or masturbation. Reassure your partner/s that urine is sterile.

Changes to the anus – Radiation therapy to the abdomen or pelvic area may irritate the lining of the bowel and rectum. This can cause bowel  problems, and the skin inside the anus may be more sensitive. If the anus area is sensitive after radiation therapy, take it slow and work up to full penetration. Fingering, rimming, using small dildos and picking positions where you control the speed and angle of penetration may help. Although sensitivity to the anal area may improve after a few months, some changes are permanent.

Sex with a stoma – Some types of surgery for bowel, anal, ovarian or bladder cancer create a stoma. This is an opening in the abdomen that allows faeces and urine to be collected in a small plastic bag. Sometimes a stoma is needed for only a short time, but sometimes it is permanent. Planning can help make sexual intimacy for people with a stoma satisfying and fulfilling. Consider wearing clothing like a slip or cummerbund to cover the stoma. You could secure the bag with tape to stop it moving. Talk to a stomal therapy nurse about products such as smaller pouches or a stoma cap. Do not use the stoma for sex.

Early menopause – Some cancer treatments can cause menopause symptoms or early menopause. These include surgery to remove both ovaries; hormone therapy to block oestrogen; and radiation therapy and chemotherapy, which can damage the ovaries. Menopause symptoms can include a dry vagina and mood changes, both of which can affect libido.

Changes to the vagina – Cancer treatment may cause temporary or permanent changes to the vagina. Surgery may shorten the vagina, and pelvic radiation therapy can narrow the vagina, causing thinning of the walls and dryness. If you have a surgically created vagina (vaginoplasty), speak to your doctor about the effects of radiation therapy.

Penetration with fingers, a penis and/or sex toys such as dildos or other objects may be difficult and painful. A narrower vagina will also make cervical screening uncomfortable. Talk to your doctor about the options for keeping the vagina open. They may suggest using dilators in different sizes to dilate and extend the vagina. Using extra lubrication may make sexual intercourse more comfortable. Choose a water-based or silicone-based gel without perfumes or colouring.

Changes to the prostate – Pleasure experienced from rubbing or stimulating the prostate during sex may change with certain prostate cancer treatments. If you have radiation therapy, the prostate may feel less sensitive. You won’t feel the same pleasure if the prostate is removed with surgery (radical prostatectomy). It may take time to adjust to this change and for you to become more aware of other pleasurable sensations.

Changes to the penis – Surgery for prostate or penile cancer may shorten or shrink the penis. After prostate cancer surgery, the difference is often small, usually about 1 cm. Changes in size may happen because of scar tissue or the nerves not working properly.

Erection problems – After surgery for prostate cancer or bowel cancer, getting and keeping a firm erection can be difficult. This is known as erectile dysfunction or impotence. How long the problem lasts will depend on your age, how easily you got an erection before surgery and how much the   erectile nerves were damaged. Having radiation therapy or taking androgen deprivation therapy can also cause erection problems.

You don’t need an erect penis to have an orgasm. However, firmer erections are needed for penetrative sex. Erection problems can make having penetrative sex more difficult or painful, and you may find this makes you feel anxious and frustrated. Doing pelvic floor exercises can help improve erections. Other options include using erection aids such as a vacuum pump, constriction ring around the base of your penis, or medicines. Ask your doctor for more details about these methods.

Other ways to experience pleasure include masturbation or oral sex, but you may be worried about how your sexual partner/s may feel. Open and honest communication about what has changed and nonsexual touching can help maintain intimacy in a relationship.

Changes in ejaculation – After some types of surgery and radiation therapy (e.g. for prostate cancer), you won’t be able to ejaculate semen. This is known as dry orgasm. This is because semen is no longer produced. If ejaculating semen was an important part of enjoying sex for you or your partner/s, you might want to discuss this change with them.

Changes to how you enjoy sexual intimacy and activity can be challenging and upsetting. Give yourself time to adjust. There are several ways to adapt  how you have sex during or after cancer treatment. You might find some of the following tips useful.

Talk about what has changed – Share any concerns about having sex or being intimate with your partner/s. Tell them when you are ready to have sex, what still works for you, what doesn’t and if they should do anything differently.

Try other forms of intimacy – Show affection by cuddling, holding hands, lying together naked, kissing and massaging. Talk about what has changed to avoid misunderstandings and take the pressure off going further.

Explore different ways to have sex – If the way you used to have sex has changed, try different sexual positions; explore different erogenous zones;  manual sex, including fingering and fisting; mutual masturbation; oral sex; genital rubbing; personal lubricants (lube); vibrators and other sex toys; erotic images and stories; sexual fantasies and kink.

Plan ahead – Using lubricants (lube) and erection devices, taking medicines, and managing incontinence or stomas may all mean you have to plan when to have sex. Some people say they miss spontaneity, others find that scheduling sexual activity gives them something to look forward to.

Focus on other aspects of your relationship – Many people in relationships do not see sex as important. How you feel about sex may also change as you get older. Spend time together doing things you both enjoy that also bring you closer. That way, sex isn’t the only way that you show your affection and share intimacy.

Use relaxation and meditation techniques – Feeling relaxed can help with sexual pleasure. Use free apps and podcasts to guide you through learning relaxation and meditation techniques. Many treatment centres run meditation programs.

Explore what has changed on your own – Touch and masturbation can help you to understand any changes in how you feel in a way that you have complete control over. You can figure out what feels good to you, or what feels sore or numb, without feeling self-conscious or pressure to “perform” or to keep going if you don’t want to. Once you feel comfortable exploring your body, you can show your partner/s what feels good and works best.

Seek assistance – Ask your health care team how to manage any sexual changes. Your doctor can also refer you to a sexual health physician, sex  therapist or psychosexual counsellor.

Coping with treatment and recovery may affect your relationship with sexual partners. Your established roles may change, they may worry about hurting you, or you might feel too tired for intimacy.

Research suggests that communicating during treatment can help partners work through any issues. If you find that the changes after cancer treatment are getting in the way of a fulfilling sexual life, ask your GP or cancer specialists for a referral to a counsellor, sexual health physician or sex therapist.

Adolescence and the young adult years are a time for exploring your sexuality and identity, including your sexual orientation and gender. This process can be more complex if you are diagnosed with cancer. If you’ve recently started exploring your identity, needing to have treatment for cancer can interrupt this.

Feeling isolated – If you already feel different or isolated from people your own age because of your sexual orientation, gender or intersex variation, cancer can make you feel even more lonely.

Worrying about disclosure – Getting diagnosed and treated for cancer means accessing many health services. It can be challenging to talk about your sexual orientation, gender or intersex variation with others when you are still working it out yourself or have only recently come out. Some young people hide their identity from health professionals, because they fear being judged, discriminated against or outed to family.

Get in touch with Canteen. This organisation offers counselling in person, via phone, email or direct message (DM). Canteen also runs online forums and camps. If you’re feeling anxious or depressed, call QLife on 1800 184 527.

If you’re single, you may feel nervous about hook-ups or starting a new relationship during or after treatment. You may wonder if you have to tell a new person about your cancer diagnosis and when to do this. This could depend on whether the relationship is casual, or you see it becoming more long term.

It may help to take new relationships slowly and share personal information when you feel you can trust the person. You can discuss how to adapt your sexual activity, try more activities without penetration, or change the length and intensity of your sexual encounters. You can also talk to a psychosexual or relationship therapist for more suggestions.

You might decide that you want to focus on your health and wellbeing or that you don’t have the energy for hook-ups or a new relationship.

Tips for hooking up

• Set boundaries via messages before meeting.
• Consider adding something about your cancer journey on your dating profile.
• Share details of your diagnosis and side effects when you feel ready. You don’t have to reveal everything in one go. You can disclose the details over several conversations. It can be in person or via text.
• Practise what you want to say and how you say it, so it feels more natural.
• Talk to a psychosexual or relationship therapist for strategies and support.

Lack of experience – It may be harder to find cancer specialists with an understanding of the ways in which trans health needs affect cancer care. It can be difficult dealing with health professionals who think of sex as binary and you may fear being misgendered.

Misgendering – Health professionals may incorrectly assume your gender or that of your partner and use the wrong words or pronouns when referring to you. You might find this misgendering upsetting and it could undermine your trust and confidence.

Outdated forms – Many medical forms do not include options to record your gender, pronouns and sexual orientation. It can also get complicated if the gender or name you use on the form doesn’t match the details on other official documents, such as your Medicare card.

Using gender-affirming hormones for a long time – Taking oestrogen for a long time may increase the risk of breast cancer. At this stage, it isn’t clear if taking testosterone for a long time increases cancer risk.

Services that are gendered – Some cancers are screened and treated in a cisgender way (e.g. ovarian cancer in a women’s hospital), which can feel isolating if you are trans or gender diverse.

Ways to manage challenges

• See a health professional who is affirming of your gender. To find a suitable doctor, use word of mouth or search TransHub.
• Look for services that are trans friendly.
• Tell your cancer care team about your relevant anatomy, the sex you were assigned at birth, and any hormone therapy you’re taking. This can help the team recommend treatments and give you information that is right for you.
• Ask the receptionist to update your record with your name and pronouns, or consider wearing a pronoun badge or pin.
• Practise what you want to say to your doctor before an appointment to help the words come out more easily. Or read from a pre-prepared letter. Avoiding eye contact may make it easier.
• Let your health professionals know what language you are comfortable with for body parts.
• Bring someone to your appointments for support. They can speak for you if you don’t know what to say, get tongue-tied or freeze in a challenging  situation.
• Use the Genders, Bodies and Relationships Passport to make telling your health professionals about your gender, body and relationships easier.
• Explain what is important to you. This could include concerns about whether you will be able to continue gender-affirming treatment.
• Visit Can We to find screening programs that are right for you.
• Consider making a complaint if you think you’ve been treated inappropriately.

Cancer can affect anybody, but there may be additional distress involved for trans people who have cancer in body parts that their doctors may not expect due to their gender, e.g. trans men with cervical cancer, trans women with prostate cancer, or non-binary people with any form of cancer.

It is important to screen for the parts of your body that you have. If you have had surgery to remove certain body parts (e.g. a mastectomy/top  surgery, or reproductive organ/s), it can be helpful to talk with your surgeon and health care team about what (if any) cancer risk still remains after that surgery.

Breast cancer – Everyone has breast tissue in the breast and chest area, which means they could get breast cancer. But risks can vary:

• Trans and gender-diverse people who develop breasts at puberty have a similar level of risk to cisgender women.
• Trans women and gender-diverse people who have breasts from taking gender-affirming hormones have a similar level of risk to cisgender women.
• Trans men and other people who have had gender-affirming top surgery have a lower risk of developing breast cancer than cisgender women, but may still need to screen for breast cancer in the future.

Having a mastectomy for cancer is different from gender-affirming top surgery. A mastectomy removes all the breast tissue from half or all of the chest area and often the nipple. Top surgery usually keeps some breast tissue that can be formed into a masculine chest and often the nipple is retained. You may have had this procedure before you were diagnosed with cancer.

Prostate cancer – The prostate is not removed during genital reconfiguration (also known as sexual reassignment surgery or SRS). This means all trans and gender-diverse people who were born with a prostate can get prostate cancer. It is common for the prostate to grow larger with age. You may be at higher risk of prostate cancer if you have a family history of prostate cancer, or if you started hormone therapy for gender affirmation later in life and already had some cancer in your prostate.

Taking feminising hormones (such as oestrogen, or testosterone blockers) or having your testicles removed, reduces your risk of prostate cancer by lowering the levels of testosterone. Although the risk of prostate cancer is likely to be low, keep in mind the following:

• if your doctor does not know your trans status, they may not ask about any potential prostate symptoms
• your PSA blood test results may look different if you are taking hormones like oestrogen
• you may not have any prostate cancer symptoms, or symptoms such as urinary problems may be mistaken for symptoms related to gender-affirming surgery.

Other cancers of the reproductive organs – There are a range of cancers that affect reproductive organs, including cancer of the cervix, ovaries, testicles or penis. If you have any symptoms including pain, discomfort, or a change in feeling or function of these body parts, it is important to see a trusted doctor about them.

Some cancer treatments can have an effect on your identity. Talk to your cancer care team about what is important to you so this can be considered when working out your treatment options.

Surgery

Surgery to treat cancer may result in physical changes that make you feel uncomfortable or distressed about your body (dysphoria). Or surgery can affirm your gender and/or ease existing feelings of gender dysphoria. It’s okay to not be sure how you’re feeling or how you will feel.

If you need to stay in hospital, ask what ward you will stay on. You may be able to stay in a private room or mixed-gender ward. It can feel isolating to receive treatment in settings that do not reflect your gender.

Radiation therapy

If you have had genital reconfiguration, including surgery to make a penis or vagina, radiation therapy to the pelvic area may affect these organs.

If you have had surgery to make a penis – Pelvic radiation therapy can usually be given in a way that avoids this area. If you also still have a vagina (sometimes described by trans people as front hole), radiation treatment team may suggest using dilators regularly after treatment to help keep your vagina/front hole open. While dilators can be helpful for continuing to have cervical screening or sex, it’s your choice whether or not to use them.

If you have had surgery to make a vagina – Pelvic radiation therapy may narrow the vagina or make the skin more fragile and sensitive. Keeping the vagina open and supple will make penetrative sex more comfortable, but it is also important for having medical examinations in the future or screening tests. You may be offered dilators to prevent scarring and shortening of the vagina. Some people find using a dilator upsetting. Talk to your doctor about your treatment goals, so they can understand what you’d like and how you feel.

If you have had other genital surgery – Other genital surgeries, including zero-depth vaginoplasty (to create a vulva) and metoidioplasty (to create a penis from the clitoris), may also be affected by radiation therapy. Talk to your surgeon and treatment team about what to expect and how you can look after yourself.

Using gender-affirming hormones during treatment

If you are taking gender-affirming hormones, you may be able to continue taking them during cancer treatment. This will depend on the type of cancer and treatment you had.

Talk to your team about the possible risks and benefits before you make any decisions about taking a break, stopping or reducing your  gender-affirming hormone treatment.

Your reasons for taking the hormones are also important and you may feel the benefits of continuing to take them outweigh the risks for you.

Some treatments for cancer may change how you look or affect a part of your body that aligns with your gender. For example, hair loss or a change in your body shape may be upsetting if your appearance is an important part of your identity. These changes may affect your body image and sense of self, and can be difficult to cope with.

You may also feel relieved if the changes affirm your gender. For example, surgery to treat cancer may remove a body part that you would prefer not to have. Or you may feel distressed if the changes threaten how comfortable you are in your body. How you react will depend on the type of cancer and treatment you have.

Palliative care is person-centred care that helps people with a progressive, life-limiting illness to live as comfortably as possible. The main goal is to maintain your quality of life by dealing with your physical, emotional, cultural, social and spiritual needs. Palliative care also supports families and carers, including with bereavement care.

Depending on what services are available where you live, you can have palliative care at home, at a residential aged care facility, or in a hospital or specialist palliative care unit.

Barriers to inclusive palliative care

After experiencing a lifetime of discrimination and stigma, many LGBTQI+ people worry about receiving palliative and end-of-life care that is safe  and meets their needs. Your concerns about receiving inclusive palliative care may also be influenced by any unpleasant experiences and negative attitudes you’ve had when friends had palliative care during the HIV/AIDS epidemic.

Reasons why LGBTQI+ people may avoid or delay accessing palliative care services include:

• a general distrust of health care providers based on past experiences of discrimination
• health care providers assuming that everyone is heterosexual, binary or cisgender, which can make it harder for LGBTQI+ people to have their care needs identified and met
• fear of negative attitudes, being harassed or having to hide their identity
• fear that health professionals will make assumptions about their gender, body or sexual orientation or not affirm their gender
• feeling afraid of being judged
• concerns about their physical safety
• concerns about not receiving respectful personal care
• worry about their partner/s or family of choice being excluded
• social isolation and lack of access to palliative care services
• lack of support with advance care planning
• fears about facing end of life.

Other aspects of identity, such as age, race, culture, disability, and where you live, can influence how you feel about palliative care.

Respectful, inclusive care

All LGBTQI+ people have the right to palliative care that is safe, respectful and inclusive. It is unlawful for palliative care services to discriminate against LGBTQI+ people.

Some LGBTQI+ people who use palliative care services disclose their sexual orientation, gender and intersex variation, while others don’t. It is your decision how much you choose to reveal, but letting your palliative care providers know can help them best meet your needs. Hiding your identity can create another level of stress if you are afraid of being outed.

When looking for palliative care providers, consider asking how they make people feel safe, included and respected. This may provide an opportunity for you to raise any specific care needs relating to your sexual orientation, gender or intersex variation.

Recognising family

Palliative care recognises the importance of involving partners, family and carers in decisions about care. The palliative care team will also provide family and friends with emotional support and referrals to counselling and grief support.

Some LGBTQI+ people are estranged from their family of origin and surround themselves with a chosen family. Other people are not out to their family or their family is hostile to their identity. Sometimes, conflicts can arise between the family of origin and the chosen family.

To ensure that the people you want to make decisions on your behalf are recognised by the palliative care service, you need to legally appoint one or more substitute decision-makers.

Intimacy and palliative care

Many people say that sexual activity and intimacy remain important to them even when cancer is advanced. It is okay to talk to your health care team about the impact of any treatment on your sex life or your ability to be intimate at any stage.

If you have a partner or partners, try to spend intimate time together, rather than as “patient” and “carer”. If you are in residential palliative care, ask your treatment team if it’s possible to use a double bed so you can have some private time. Intimacy can provide comfort and maintain connection during this time.

Even if sexual intimacy is no longer possible or desired, you may enjoy physical closeness through cuddling, touching, massage or simply lying beside each other.

Download our booklet ‘Understanding Palliative Care’

When diagnosed with a life-limiting illness, it can be a good idea to plan for your future health care. Discussing your preferences with your family, friends and treatment team helps ensure that your wishes are respected if you lose the ability (capacity) to make your own decisions.

Everyone has their own individual preferences, and these will often change over time. Making your wishes clear can help give you peace of mind, protect your rights and ensure that the people you want involved in your care are included.

The following are steps to take as part of advance care planning:

Prepare an advance care directive – You can write down your goals and instructions for your future medical care in this document. It also provides a record of your values and treatment preferences. Doctors, family, carers and substitute decision-makers must follow this record if you become unable to communicate or make decisions. Depending on which state or territory you live in, it may be called an advance care directive, health direction or advance personal plan.

Appoint a substitute decision-maker – You can legally appoint one or more people to make treatment decisions for you if you are not capable of consenting yourself. A substitute decision-maker should be someone you trust, and who understands your values and preferences for care. They do not have to be your next of kin or a carer. Depending on where you live, they may be known as an enduring guardian, enduring power of attorney or medical treatment decision maker.

Appoint an enduring power of attorney – If you are unable to look after your own financial and legal affairs, you can legally give one or more people the power to make financial or legal decisions for you.

Make a will – A will is a legal document that sets out what you want to happen to your assets after you die. These assets are called your estate and may include your house, land, car, bank accounts, jewellery, clothes, household goods or investments. A will can also record your wishes regarding guardianship plans for any children you have.

A will needs to be prepared and written in the right way to be legally valid. It is best to ask a lawyer to help you or contact the Public Trustee in your state or territory. If you die without a will, you are said to die intestate. Your assets are distributed to family members according to a formula provided by the law. Although any will can be challenged in court, having a valid will usually means your assets will go to the people of your choice and avoids extra expenses.

Default decision-maker

If you lose the capacity to give consent for medical treatment and you haven’t appointed a substitute decision-maker, consent may be given by a default substitute decision-maker. Depending on where you live, they may be known as the person responsible, default substitute decisionmaker, available consenter, statutory health attorney or medical treatment decision-maker.

The law sets out who should make decisions on your behalf. They are usually approached in the following order:

• guardian – either an enduring guardian you appointed or a guardian appointed by a court or tribunal
• spouse or partner – the most recent spouse, including a de facto partner, with whom you have a close and continuing relationship
• unpaid carer – someone who provides ongoing care
• relative or friend – someone who has a close personal relationship and an interest in your welfare.

For more information on palliative care for LGBTQI+ people, visit LGBTIQ+ Health Australia.

Communicating openly

It can help to have the difficult conversations with your partner/s and family (chosen or otherwise) early, so that you are not rushed into decision-making. You may want to choose what you would like for your funeral, and take an active role in how you will be remembered. It can be easier for both you and your intimate partner/s to have certainty about this early so you can focus your energy on having treatment or feeling your best. It may not necessarily be a comfortable conversation, but it can be proactive, honest and deeply important for those involved.

Each state and territory has different laws about advance care planning. For specific information and advice, call Cancer Council 13 11 20. We may be able to refer you to a lawyer. You can also visit Advance Care Planning Australia or call them on 1300 208 582.

Download our booklet ‘Understanding Palliative Care’