Coping with cancer

Finding out you have cancer can be difficult for anyone to deal with. Research has shown that the experiences of cancer and its treatment can be different for LGBTIQA+ people.

How you might feel

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 LGBTIQA+ people may have greater risk of mental and emotional distress after a cancer diagnosis for several reasons. You may feel anxious about disclosing personal information to health professionals, fear discrimination 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 experienced stigma or shame for being LGBTIQA+. They may blame themselves for delaying getting cancer symptoms checked, or feel judged by others. It’s natural to feel vulnerable while having cancer treatment.

If you are distressed, anxious or feeling low or depressed, appropriate support and information is available. Call Cancer Connect on 13 11 20 or see Emotions and cancer and Just diagnosed.

Cancer sucks but it has forced me to choose how I genuinely want to live the rest of my life. That choice has opened doors and possibilities I had never dreamed of.

Nadia Transgender woman, prostate cancer

Diversity of experience

A person’s life can be shaped by their sexual orientation, gender or sex characteristics, as well as other factors. These include age, race, language, culture, spirituality, disability, education, relationships and financial situation, and past experiences with the health system.

These factors can overlap to affect health and wellbeing, as well as cancer care. Aside from discrimination for being LGBTIQA+, some people may also have had to deal with ageism, sexism, racism or discrimination related to disability.

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

• transgender, gender-diverse and non-binary people – may be less likely to use mainstream services because they have often experienced transphobic attitudes, misgendering or difficulties getting gender-affirming treatment
• intersex people – may have had negative experiences with health professionals, such as prior surgery to make their body “fit” medical and social norms for male or female bodies, or medically unnecessary surgery as a child. They may also have seen health professionals who have limited knowledge of intersex variations
• young people – may experience distress because of being bullied at school, rejected by family, or working out how to come out
• older people – grew up at a time when being homosexual or transgender was considered an “illness” or a “crime”, and may have experienced discrimination, family rejection or isolation
• Aboriginal and Torres Strait Islander people – brotherboys or sistergirls may face added discrimination from being both LGBTIQA+ and Aboriginal or Torres Strait Islander (from the wider community, their own community, or both).

Other communities that may face challenges include:

• people from culturally and linguistically diverse backgrounds – may face discrimination from within their community as well as from LGBTIQA+ communities, leading to feelings of stigma and shame
• people with disability – may face discrimination from being both LGBTIQA+ and a person with disability, which can make it harder to access services and have their sexual orientation, gender or needs recognised
• people living in regional or rural areas – may be socially isolated, and have less support and limited access to LGBTIQA+ specific services.

Fear of discrimination

Some LGBTIQA+ people have experienced discrimination because of their sexual orientation, gender identity or intersex variation, and may worry about being discriminated against during their cancer care. This fear may be stronger for people who have had negative experiences with religious organisations in the past, and are having cancer treatment in a faith-based hospital.

Discrimination can include inappropriate comments, poorer care, or excluding your partner/s from discussions or your hospital room. This behaviour can affect your physical and mental health. For more information, see Dealing with discrimination.

I was incredibly worried about how we’d be treated as a queer couple... Turned out that we had no problems at all, but it was horrible that my brain thought of that first.

Charlie Queer, non-binary

Emotional impact of disclosure

At the time of diagnosis, you may not have told others you’re LGBTIQA+, or you may have shared this with some people but not others. Some people want to share personal information with their cancer care team, while others feel it’s not relevant or fear discrimination. Some may not have a choice because information is linked to their diagnosis or treatment, or is already in their medical records.

It can be hard to talk to your cancer care team about your sexual or gender, whether you’re out or not. But sharing this information can help you discuss your needs, preferences and values. It also helps your team recommend appropriate treatments, provide relevant information and connect you with LGBTIQA+ support groups.

During treatment, you’ll see many health professionals and may have to explain your situation several times. You may need to decide whether to share information with each professional you meet. This can feel stressful and tiring, especially if you’re unsure how someone will react. Inviting people in is a process; it’s okay to take it one step at a time.

Coming out over and over again, because of multiple doctors and specialists, is hard.

Laurie Queer, colorectal and ovarian cancer

I came out as gay just before I was diagnosed. I was still very uncomfortable with myself. And then I was diagnosed with cancer and that took precedence.

Carter Gay man, leukaemia

Sharing personal information with 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 help you.

• Decide beforehand – Before your appointment, find out more about the hospital or treatment centre you want to attend. Think about how much information you want to share and who you want to share it with.
• Have someone with you – Consider having a support person, such as a spouse, partner/s, family member or close friend, with you to help with the discussion and to provide support. You can also request support from a healthcare professional, such as a cancer care coordinator or social worker. Your support person can 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.
• Practise conversations – You may feel more confident talking to your health professionals if you practise what you want to say with your spouse, partner/s, family and friends.
• 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.
• Share 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.
• 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.
• Introduce your partner/s – If you have a spouse or partner/s, 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 LGBTIQA+ friendly. 
• Try communication tools – You can use the Genders, Bodies and Relationships Passport to make telling your health professionals about your gender, body and relationships easier.
• Seek support – Contact QLife, a national peer support and referral service for LGBTIQA+SB people. Call 1800 184 527.