Coping with breast cancer as an LGBTIQ+ person

Being diagnosed and treated for breast cancer can be an emotional roller-coaster because of the ups and downs that happen along the way. Finding strategies to help you cope with breast cancer is important. Your feelings of coping may be affected if you are dealing with other challenges as an LGBTIQ+ person.

Distress and fear in cancer care

Breast cancer can cause distress for LGBTIQ+ people

Breast cancer can be distressing for you, your partner/s, children and carers. You might find that your cancer diagnosis and treatment result in a range of reactions and emotions including stress, sadness, fear and anger. Your mood can be affected by everything from trying to manage symptoms and side effects of treatment, to anxiety about the future, issues at home and managing relationships. It is quite normal to feel great one day and emotionally flat the next. 

LGBTIQ+ people may have unique concerns in addition to the concerns of all people with cancer. For example, breast cancer may uniquely affect your:

• body image 
• sexuality and intimate relationships
• options for fertility preservation.

You may feel worried about difficulties accessing LGBTIQ+ friendly services or connecting with other LGBTIQ+ people with breast cancer. 

If you are trans or gender diverse you might be worried about being misgendered or dead-named. You may be worried about cancer treatment interacting with gender affirmation treatment. If you are a person with an intersex variation, you may have experienced trauma from previous medical interventions. You may be concerned about whether you will be treated with dignity and respect in cancer care.

You might have other concerns related to your sexual orientation, gender or intersex variation.

These feelings are normal but may make you feel isolated and alone. Speaking to your treating team can be helpful to express your fears and worries. They may be able to direct you to supports available. You can also reach out to support groups such as BCNA's LGBTIQ+ online network private group.

I am worried about discrimination

If you have experienced discrimination in the past you may worry if being LGBTIQ+ will affect the quality of your breast cancer care. You may be worried about being denied life-saving care. You may be worried about hostility from your treating team or how you will be treated when you are vulnerable or unconscious. These concerns may influence your decisions about coming out (disclosure) to your treating team. 

You have the same rights as all other people to cancer care that is free from discrimination and harassment. Research shows that most treating teams want to provide high quality care to LGBTIQ+ patients. Finding an LGBTIQ+ friendly treating team and knowing your rights as an LGBTIQ+ person if accessing  palliative care can help you feel reassured.

Will my partner/s and other chosen family be welcome as part of my care team?

You have the same rights as all other people to have your partner/s and chosen family included and welcomed as part of your cancer care. They can be involved in consultations and decision-making with your treatment team. Read more about Legal rights for LGBTIQ+ people with cancer

If you are concerned about exclusion of your support people or you do not have the ability to make decisions for yourself, you may want to name someone as a medical decision maker or formalise enduring power of attorney.

You may have concerns about disclosing your sexual orientation or gender to your treating team, in order to include a same-sex or trans partner or chosen family member. Read more about Disclosure with your treating team

Will cancer make my anxiety and/or depression worse?

Anxiety and depression are common during and after breast cancer. Research shows that up to half of people with early breast cancer may experience anxiety and/or depression in the year after a cancer diagnosis. Addressing anxiety and depression early is important, particularly if you have a history of mental health problems. If you are worried about how you’re feeling, speak to your GP as soon as possible.

Strategies that may help you to cope

There are many ways to cope with the emotional effects of breast cancer. Giving yourself time to do things you enjoy, regular physical activity and relaxation and meditation can help keep your emotions in balance.

Connecting with others

Many people find talking with others, including partner/s and other chosen family and friends, helpful. If you prefer to talk to someone outside your family and friends, you can phone the BCNA Member Support team on 1800 500 258 or call Cancer Council 13 11 20 to speak to a cancer nurse for information and support.

You might want to talk to others who have ‘been there’ before you, for example through BCNA’s LGBTIQ+ online network private group.

Some people find it helpful to join local community groups and get involved in LGBTIQ+ cancer advocacy work.

Professional support

You might want to seek professional support, through individual, couples or family counselling. Your GP can refer you to an LGBTIQ+ friendly counsellor, social worker, psychologist or psychiatrist, with expertise in counselling people with cancer. Your GP can give you a GP Mental Health Treatment Plan, which gives you up to 10 Medicare-subsidised sessions per calendar year with a psychologist, social worker or clinical occupational therapist.

Support for partner/s, children and other chosen family and friends

Breast cancer is distressing not just for you, but also for those around you, including your partner/s, children, and other chosen family and friends.

If people in your support network feel they would benefit from talking with a professional, they can ask their GP for a referral to a LGBTIQ+ friendly psychologist or relationship counsellor. They may be eligible for a Medicare rebate for counselling sessions. Their GP will advise on this.

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.
• QLife is Australia’s first nationally-oriented counselling and referral service for people who are lesbian, gay, bisexual, trans, and/or intersex (LGBTI). QLife provides nation-wide, early intervention, peer-supported telephone- and web-based services to people of all ages across the full breadth of people’s bodies, genders, relationships, sexualities, and lived experiences.
• Cancer Council 13 11 20. A free, confidential telephone information and support service run by Cancer Councils in each state and territory. A referral pathway to access emotional and practical assistance for anyone affected by a cancer diagnosis, cancer patients, people living with cancer, their families, carers and friends, teachers, students and healthcare professionals. Cancer Council can connect you with support services, resources and support groups across Australia. Call Mon-Fri 9am-5pm, or leave a message and a specialist health professional will contact you on the next business day.
• Switchboard Victoria is a community based not for profit organisation that provides a peer driven, support service for the lesbian, gay, bisexual, transgender and gender diverse, intersex, queer, asexual (LGBTIQA+) communities and their allies, friends, support workers and families.
• Living Proud is a non-profit organisation which aims to promote the wellbeing of lesbian, gay, bisexual, trans, intersex, queer and other sexuality, sex and gender diverse people in Western Australia. They provide peer-support, information and resources. Please visit the website for more information.
• Parenting through cancer - A guide for parents of adolescents and young adults dealing with cancer in the family. Developed by CanTeen, this booklet is designed for parents affected by cancer who have adolescent or young adult children. The booklet provides insights into common questions and issues that many parents with cancer face. 
• 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: Through a rainbow lens – Navigating breast cancer as a LGBTIQ+ couple. Let’s be upfront about LGBTIQ+ communities that are affected by breast cancer. We know that cancer doesn’t discriminate and depending on who you are, and how you identify, your experience can be different. Joining us for this episode is Mel Krollig and her partner Riki Owens-Bennett. Mel was diagnosed with breast cancer in 2016 at the age of 36 and has had fertility treatment, a single mastectomy, chemotherapy, and radiotherapy. Riki works as a community worker for the LGBTIQ+ communities in South Australia and has been by Mel’s side during her breast cancer journey. Riki and Mel have been together for 19 years, and despite a few COVID-19 related delays, married in 2021 in a celebration surrounded by family and friends. We’ll hear about Mel’s experience of breast cancer, how Riki supported her, the challenges the couple faced together and how they navigated the system as a LGBTIQ+ couple.