Disclosure: Sharing information about your sexual orientation or gender with your treating team 

Trusting your treating team and communicating with them openly is a key part of your breast cancer journey. For some people, sharing information about their gender, sexual orientation and/or intersex variation is an important part of their communication with their team. Others may feel anxious about sharing this information or feel that it is not necessary. Disclosure to your treating team is a personal choice. 

What is Disclosure? 

Disclosure is the process of sharing part of your truth with others, including your sexual orientation, gender, or information about your intersex variation. Some people call it ‘coming out’. Disclosure is about telling your treating team who you are, and making sure they are able to support you and affirm you throughout your treatment and care. 

Your treating team may ask you about your sexual orientation (your partners gender or who you have relationships with), or your pronouns (whether you want to be referred to as she, he, they, or other pronouns). This lets you know that you and your loved ones will be respected and welcomed. They may also ask if there are preferred terms you have for your body or gender so that you feel more comfortable talking about how treatment may affect your body, intimate relationships, or fertility. For trans people, treatment may interact with hormones you may be taking. 

Others may not ask, or expect you to bring it up. Or you may be asked through questions on hospital or clinical information forms. Sometimes these forms don’t give you the opportunity to mention your sexual orientation, or may only ask about binary gender (i.e. female/male). 

You may find benefits in disclosure, whether your treating team asks you or not. You may feel respected and satisfied with your care, resulting in better psychological wellbeing. Or, you may feel that disclosure is unnecessary, that it is an added burden, or that you might get a negative response. You might not be out to your family or and worry about confidentiality. 

As you engage with your treating team, it is important to consider whether or not to disclose, whether you feel safe and ready, and how to disclose if you choose to do so. 

Should you disclose to your treating team? 

Disclosure to your treating team is a personal choice. Below we outline some reasons why you may choose to come out to your treating team. 

Being seen and heard

For some people, disclosure means living life honestly. Disclosure can also reduce stress associated with hiding who you really are. People who do not disclose tell us they sometimes feel invisible in their cancer care. People who disclose to health professionals report that their treating team recognises who they are and what their needs may be. 

Your partner is included in your cancer care

Having good support during your cancer journey is essential. It is important that your support person is acknowledged and included at all stages of cancer. Disclosure may make it easier for your partner, or other support person, to support you and speak on your behalf. You can also address questions and concerns about body image or sexuality together. 

Increased satisfaction with care

Studies have found that for some LGBTIQ+ people, disclosure to health care professionals is associated with positive health outcomes. These include being more satisfied with your medical care. Some people who come out to health care professionals also report better physical and psychological wellbeing. 

Tailoring your care plan to your specific needs

Choosing to disclose means you may be offered specific information that will help to guide your treatment decision making. For example, it may make it easier for you to have a discussion with your doctors about treatment side effects on your sexual health and wellbeing. You may also be given information about support groups that cater for LGBTIQ+ people.  

Equality in healthcare is your right

Being treated with equality and respect is a human right. It is illegal for health care providers to discriminate against you because of your sexual orientation or gender identity. For more information read Legal issues for LGBTIQ+ people with breast cancer. 

Why you might choose not to disclose 

Some people choose not to disclose their sexual orientation, gender or intersex variation to their treating team. This may be because disclosure is difficult or is an extra stress on top of dealing with cancer, or due to fear of mistreatment or discrimination. You may feel that disclosure is not necessary for your cancer treatment, or that your doctor doesn’t need to know such private information. Whatever you decide, it’s your choice to disclose or not. 

There are a number of reasons people choose not to disclose to their treating team. 

Disclosure is not relevant to your cancer care

You may want to focus on cancer treatment and your immediate medical needs, and feel that coming out is unnecessary. You may feel that your doctor can give you adequate care without knowing personal details. This may not feel like the right time to come out. 

Disclosure can be difficult

It’s hard work to have to disclose to every health care professional you meet. You never know how someone will respond. You may have had difficult experiences when you came out in the past. Dealing with negative reactions can be distressing, on top of dealing with cancer.  

You may feel disclosure will affect the quality of your breast cancer care

Health care professionals are taught to be compassionate with their patients and provide equal care to everyone. However, some people have life experiences or views that may impact on their approach to care. If you are seeing a health care professional who doesn’t offer you the care and respect you deserve, ask for a referral to another doctor who might be more compassionate towards you. Or look for healthcare professionals that are openly LGBTIQ+ friendly. See LGBTIQ+friendly services 

Your health-care setting may not feel LGBTIQ+ safe

Your hospital may not appear to be LGBTIQ+ friendly, or have any LGBTIQ+ resources or training. You may feel that people will make incorrect assumptions about you if you do disclose, or believe that health care professionals will not offer you relevant information.  

When you don’t feel safe, even starting this conversation can feel impossible. It’s also okay to not disclose, or to provide incorrect or convenient information about your identity (i.e. Being heterosexual or cisgender) in order to access the care you need. It’s always good to do this while also working with an affirming doctor (such as a GP) who can help you manage any specific healthcare needs you might have. 

You may live in a rural, regional or remote area

There may be few other LGBTIQ+ people in your community, or few health care options to choose from.  

You may want to only come out to key people

You may decide you only want to disclose to key people such as your oncologist, surgeon, breast care nurse or counsellor. You may feel that disclosure to people you see for only one appointment is not worth the effort. You may not be sure what information will be shared within the health system. 

You may not know how to disclose, or when to disclose

You may not have an opportunity to note your sexuality or gender on hospital registration forms, and it may not be asked during discussions. You may not know how to correct any assumptions that have been made about you. If you do decide to disclose, thinking about the ways you might do this before you talk to a health care professional can help.  

Tips for disclosure with your treating team 

If you decide to come out with your treating team, it can be helpful to think about what you want to share, with whom, when and how. You might consider the following. 

What you want your treating team to know

Sharing information about your sexuality or gender means your doctors can acknowledge you and your relationships in the way you want, and you can feel comfortable that they are the right people for you. However, you don’t have to share everything. What you talk about with a regular doctor, such as your GP or medical oncologist, might be different to what you share with someone you only see once. 

When you would like to disclose

Before your first appointment, it’s OK to phone or email your health care professional to find out if they are LGBTIQ+ friendly. You could ask, “My wife will attend the appointment with me, we are both women, will we be welcome at your clinic?” or “Does your clinic have any trans patients?” 

Come out when you feel comfortable to do so. If it doesn’t come up and you would like it to, ask your doctor for a few minutes to chat. If you are having a medical examination, it can be a good idea to have the conversation while you are still fully clothed. 

Take a friend, family member or partner with you. Having someone there for support may make coming out easier. 

How to disclose to your breast cancer healthcare professionals

You may be able to record information on the patient intake form. For example, if you are in a same-gender relationship, you may be able to record your partner as your next of kin or emergency contact. 

You can ask your GP to include information about you in their referring letter, such as your sexual orientation, or preferred name and pronouns. Or, you can write your own letter. Your treating team should use the name and pronouns that you request. 

If you are in a same-gender relationship, you might not have to state your sexual orientation outright, for example if your partner is attending an appointment with you, you can introduce them using your preferred terms, for example “this is my partner, Maria”. 

Ask questions about how breast cancer and treatment may impact your wellbeing. For example, you might ask “How will treatment impact my sexual wellbeing? I’m not with anyone at the moment but I have relationships with women.” 

Think about what information you would like recorded in your patient file. If the name on you Medicare card is different from the name you want to be called, you could say something like, “The name on my Medicare card is not my preferred name. I would like a note included on my file about my correct name and pronouns.” 

There is no wrong way to disclose who you are to your treating team.  

Your treating team’s reaction 

After you disclose, your health care professional may need a moment to respond. Most people want to provide high quality care to LGBTIQ+ patients. However, they may not have experience doing so. Your doctor may have questions about how they can best support you. They may seek your advice on language that they should use to describe your body, your pronouns or your partner(s). 

If you feel uncomfortable or unhappy with the way your doctor responded to you, you can ask to speak to someone else in the team, get a second opinion, or make a complaint. If you are having your treatment through the private health system, you can ask for a referral to another doctor who may be more suitable for you. If you are in the public health system, you do not always have a choice of doctors, but you can ask if it is possible to be seen by someone else.  

Acknowledgements

These materials were developed from the Out with Cancer Study, conducted at Western Sydney University, and funded by the Australian Research Council. Thanks are offered to the Out with Cancer study committee members with lived experience of cancer, BCNA LGBTIQ+ consumer representatives, ACON and LGBTIQ+ Health Australia who contributed their time and expertise. 

BCNA's LGBTIQ+ project was undertaken with support from Cancer Australia through the Supporting Women in Rural Areas Diagnosed with Breast Cancer program. 

Resources 

• The Cancer Council NSW has detailed  information on its website including a downloadable book that will help you understand how cancer and its treatment may affect LGBTQI+ people – lesbian, gay, bisexual, transgender, queer, and other diverse sexualities and genders, as well as people with intersex variations.
• TransHub is a digital information and resource platform for all trans and gender diverse (TGD) people in NSW, our loved ones, allies and health providers.
• This website provides information and resources to help understand disparities in care and research for LGBTQ+ people with breast cancer, understand how diagnosis may impact emotions, body image and sexual life, and some of the challenges you may face during treatment. 
• Being OK... Being You: A guide for young people who identify as LGBTIQ+ and have cancer. This booklet was developed through collaboration between young people and the ONTrac at Peter Mac Victorian Adolescent and Young Adult (AYA) Cancer Service. In it you will find information about the lived experiences of other young people with cancer who identify as LGBTIQ+, sexuality and gender identity, common challenges that come with a diagnosis of cancer, your rights as a young person and patient, strategies on how to manage and maximise your support networks and information to share with partners and healthcare professionals. 
• Cancer Council - Health Care Complaints. You have the right to give feedback or make a complaint about any aspect of your health care, and to receive a prompt response. Cancer Council have developed some information about the importance and feedback and complaints. 
• Podcast: LGBTIQ+ experiences of breast cancer and cancer care. Let’s be Upfront about the extra challenges and different needs of LGBTIQ+ people when diagnosed with breast cancer. LGBTIQ+ communities have unique requirements and additional concerns and anxiety when dealing with a breast cancer diagnosis, including whether to disclose their sexuality to their medical team, whether they will be able to find the support they need, and anxiety surrounding discrimination and their treatment being negatively impacted. Joining us for this episode of Upfront is Jane Ussher and Natalie Halse. Jane is a Professor of Women’s Health Psychology in the Translations Health Research Institute at Western Sydney University and is the lead researcher in the recent ‘Out with Cancer’ Study. Natalie is a registered nurse and a BCNA consumer representative with lived breast cancer experience of a LGBTIQ+ person. We hear about some of the key findings of the ‘Out with Cancer’ study and its key learnings, discuss disclosure including how to do it safely, the positive benefits, and why some people are reluctant and discover what to do if you experience a negative reaction from a health care professional and the support available. 
• Podcast: What You Don’t Know Until You Do: Unlimited, with  Dr Charlotte Tottman: Forged in Fire: Relationships with your Medical Team and Self-advocacy. Let’s be Upfront about navigating relationships with your medical team.  Your medical team is often comprised of a group of professionals who you don’t know and who come into your life at short notice, in a highly stressful and emotional time. In this episode, Charlotte explores how for many people their experience with their medical team is a positive one, however this isn’t always the case.  Charlotte shares how it’s important to advocate for yourself and have expectations of what you can reasonably expect from different members of your medical team and what is important to you. We also learn about cognitive and behavioural strategies to help you identify your individual needs and tools that can assist.  This podcast was recorded in February 2023.