Coping with DCIS as an LGBTIQ+ person

Being diagnosed with ductal carcinoma in situ (DCIS) means you have abnormal cells in your milk ducts, but they have not spread into the breast tissue. You may need treatment, but you do not have invasive breast cancer. 

Being diagnosed and treated for DCIS can be an emotional roller-coaster because of the ups and downs that happen along the way. You might feel confused about what DCIS is and why, even though it is not invasive breast cancer, it is treated in a similar way.

Finding strategies to help you cope with DCIS is important. Your feelings of coping may be affected if you are dealing with other challenges as an LGBTIQ+ person.

DCIS can cause distress for LGBTIQ+ people

DCIS can be distressing for you, your partner/s, children and carers. You might find that your DCIS 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 additional concerns about how DCIS might affect them, such as:

• body image
• sexuality and intimate relationships.

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

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

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

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 DCIS healthcare. 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 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 DCIS healthcare. They can be involved in consultations and decision-making with your treatment team. Read about legal rights for LGBTIQ+ people with cancer.

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 DCIS make my anxiety and/or depression worse?

Anxiety and depression can be common during and after treatment for DCIS.  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 DCIS. 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 Helpline 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+ DCIS 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 DCIS. 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

DCIS can be 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.

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

Cancer Council NSW has information 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 a national counselling and referral service for LGBTI people. QLife provides early intervention, peer-supported phone and online services to people of all ages across the full breadth of people’s bodies, genders, relationships, sexualities, and lived experiences.

Cancer Councils in each state and territory have a free, confidential telephone information and support service - 13 11 20. Call Mon-Fri 9am-5pm, or leave a message and a specialist health professional will contact you on the next business day. They can provide referrals for emotional and practical assistance to anyone affected by a cancer diagnosis.

Switchboard Victoria provides a support service for 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.