Common questions about LGBTQI+ people and cancer

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 (for more on this, see Coping with cancer).

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 gender-affirming 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 regula

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.

For more general information on your legal rights, see 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. If this is happening to you, see How to deal with discrimination.

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. See also the Caring for someone with cancer.

I was completely open about being a lesbian with a life partner and two children. My wife, Melissa, was acknowledged and respected by my doctors and the team. This openness was important because I became very ill during treatment and lost the capacity to speak.

JULIE (LESBIAN, OROPHARYNGEAL CANCER)

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.

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.

Get a second opinion – 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.

Ask for support – 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.org.au/resources/directory.

Consider making a complaint – 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.

If you think you have been discriminated against because of your sexual orientation, gender or intersex variation, see Dealing with discrimination.

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. Learn ways to identify an LGBTQI+ friendly support service.
• Contact QLife 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.
• Chat with other young people aged 12–25 diagnosed with cancer at Canteen Connect.
• Call Cancer Council 13 11 20 or visit the Online Community.
• Get practical and financial assistance.

For more general information on how to find support, see Emotions and cancer.