Breast cancer and people with an intersex variation 

In this article, we use the term ‘people with an intersex variation’ to mean people born with congenital, atypical sex traits. The variation may be chromosomal, hormonal and/or anatomical in nature. Some people with an intersex variation identify as part of the many LGBTIQ+ communities, but many do not. As a person with an intersex variation, you have the right to be treated with dignity and respect and for cancer care to be free from discrimination and harassment. 

You may have questions about how you will be impacted by breast cancer. Will your treating team understand your needs as a person with an intersex variation? How will breast cancer treatment affect your body and body image? Will hormone therapies affect your breast cancer treatment? 

Questions about breast cancer 

Will the treating team understand my needs as a person with an intersex variation?

You may have concerns about whether your treating team will understand your needs as a person with an intersex variation. You may have previously had medical interventions related to your intersex variation. You may have had interventions conducted in childhood without your consent. These experiences may affect how you interact with your treating team. You may be worried about negative outcomes from your cancer treatment. You may be worried about discrimination in cancer care. 

It is important that you understand and give consent to your breast cancer treatment. Ask your treating team to answer any questions you have. It may help to bring your partner/s (if you have one) or another support person to appointments to take notes and ask questions. Your treating team should only ask questions about your intersex variation if it is clinically relevant to your cancer treatment. 

If you feel uncomfortable or unhappy with any interactions during your cancer care, ask to speak to someone else in your treating team, get a second opinion, or make a complaint. Finding social connection and support, such as from other intersex people with cancer, may also be helpful. See Social support for LGBTIQ+ people with breast cancer 

How will breast cancer impact my body image?

Breast cancer may affect your body image.  Some breast cancer treatment may result in physical changes that you do not like, or may be affirming. Mastectomy, ceasing hormone therapy, hair loss, scarring, or weight changes may affect how you feel about yourself and how others see you. For more information read LGBTIQ+ body image and gender. 

Can I still use hormone therapy during cancer treatment?

There are very few clinical guidelines about breast cancer treatment for people with an intersex variation using hormone therapy. It is important to talk to your treatment team about your hormone therapy so they can work with you to make decisions about your cancer treatment. Your treatment team will advise whether or not you can continue taking hormones. 

Breast cancer risk among people with Klinefelter syndrome

There are some studies that indicate males with Klinefelter syndrome are at an increased risk of breast cancer. However, their risk is still approximately 70% lower than among females. If you have Klinefelter syndrome and are concerned about your breast cancer risk, speak to your GP. 

How can I connect with other people who have an intersex variation and breast cancer?

Finding social connection and support may be an important part of your cancer journey. It can be helpful to speak to other people with an intersex variation who have similar experiences to you. You may be able to find connections through official cancer support websites or groups on Facebook led by people with an intersex variation and cancer, for example. 

BCNA has a private online discussion group for people who identify as LGBTIQ+ with breast cancer. 

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. 

Intersex Human Rights Australia Ltd (formerly Organisation Intersex International Australia or OII Australia) is a national body by and for people with intersex variations. Their website provides information and resources on a range of intersex topics, such as: 

• Health and wellbeing 
• Healthcare pathways 
• Identification documents 
• Clinical guidelines 

The BCNA Online Network is an active online community where Australians affected by breast cancer can find information and support. The Online Network community is a place where people can connect with others and share their stories and experiences. The Online Network includes women and men in different stages of their breast cancer journey, people living with metastatic breast cancer, partners, family and friends as well as health care professionals and other service providers. There is a private group for people who identify as LGBTIQ+