About us

Our Why

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OurTNBC Community was created in response to feedback from the patient community for a dedicated resource with reliable information about all aspects of triple negative breast cancer (TNBC), including diagnosis, treatment options, living with TNBC, and recovery.

Real People, Real Stories Meet our Working Group

Gilead brought together 20 women with triple negative breast cancer to co-create OurTNBC.

We strive to inform and empower, sharing information on TNBC and the latest research findings, offering support every step of the way. We are committed to being a safe online space to connect, find hope and access support and build a stronger, more unified voice for the TNBC community.

From creating and reviewing content to sharing personal experiences, our working group members are central to Our TNBC community. All working group members are united around the goal of helping to change the current conversation about triple negative breast cancer and giving a voice to the needs of this unique community.

Our Mission

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Our mission is to empower the TNBC community by providing reliable, relevant, and accessible resources that address the unique challenges of living with TNBC.

We are committed to creating a space where patients can find the support they need.

We believe in the power of community and the importance of having the right information at your fingertips when you need it most.

So, we will continue to design this hub alongside you, the patients.

Our Purpose & Values

This space is your space. It’s been created by the TNBC community, for the TNBC Community.

Creation

To fill a gap highlighted by extensive research with the patient community, by building an online hub and resource dedicated to people impacted by triple negative breast cancer (TNBC) and their families.

Curation

To create a resource that complements existing education, information and support provided by Australian breast cancer organisations. We do this by creating a central access point for people seeking tailored information about triple negative breast cancer (TNBC).

Connection

To foster connections between those with a shared experience and provide a platform to amplify their voice through storytelling, digital content and audio.

Collaboration

To collaborate with local and global organisations to ensure no duplication of resources and services, but to provide a repository and pathway for patients to easily access the resources.

An Open Letter by OurTNBC Community

The catalyst for OurTNBC Community

Everyone says not to google triple negative breast cancer. The numbers are scary. But I did it because of human curiosity. Because I deserve to know.

What I saw set fear into my core… and that fear never really leaves.

Triple the negative. Triple the stats. Triple the anxiety. Triple the fear.

But still I chose life. Everyone who gets diagnosed with triple negative does.

We deserve more. We deserve a more hopeful story about our type of breast cancer. We deserve better understanding and more research and more treatment options, more life.

Our TNBC Community is a collective of patients. Those who have faced front-on the ‘bad’ breast cancer – who truly know what it’s like.

We see you; we hear you and we’re with you.

We know that once you’re a part of this triple negative cancer club, you never truly leave. You have a ticket in your back pocket with no expiry date. We know that suffering the wrath of breast cancer is bad enough, without being told it’s the worst one to have.

So, here we stand. Hands together, side by side, committed to changing the conversation. Calling for action, for more options, for more hope. Because everyone deserves life and choice.

Not all breast cancers are the same, and for all those in the triple negative cancer club past, present and future, we need so much more than what we have right now.

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This resource has co-creation at its heart, so if you want to see something we haven’t covered or want to collaborate on something with us…

Stage Selector

This site is tailored to meet you where you are, offering practical resources, personal stories, insights, and more—all in one easy-to-navigate space. By choosing the stage relevant to you, the information available on this site will be tailored to you.

Glossary of Key Terms

These are explanations of terms that medical professionals and others may use when discussing your TNBC.

Advanced breast cancer

A commonly used term for secondary, metastatic or stage 4 breast cancer

Adjuvant therapy/treatment

Treatment (e.g. chemotherapy) given after surgery.

Alopecia

Hair loss

Areola

The area around the nipple

Axillary dissection/clearance

The removal of some or all of the lymph nodes from the armpit to see if the breast cancer has spread beyond the breast.

Benign

Not cancerous

Biopsy

The removal of cells or tissue from the body to see if they are cancer cells

BRCA1 and BRCA2

Women with a fault, or mutation, in one of these genes have a higher than normal chance of developing breast or ovarian cancer

Breast conserving surgery

Surgery to remove breast cancer and a small area of healthy tissue around the cancer. Also known as lumpectomy.

Chemotherapy

Treatment for cancer using drugs

Clinical trials

Studies involving patients to see if a new treatment is better than an existing one

Complementary medicines

Complementary medicines are products that are used in addition to conventional medical treatments (e.g. chemotherapy and hormone therapies). Complementary medicines include vitamin and mineral supplements, such as fish oil capsules or vitamin D tablets, and herbal medicines.

Complementary therapies

Complementary therapies are practices that are used in addition to conventional medical treatments (e.g. chemotherapy and hormone therapies).Some examples of complementary therapies often used by women with breast cancer include massage, yoga, acupuncture and reflexology.

Double mastectomy

Removal of both breasts during breast cancer surgery

Ductal Carcinoma In Situ (DCIS)

Non-invasive breast cancer confined to the ducts of the breast

Early breast cancer

Breast cancer that has not spread beyond the breast or lymph nodes under the arm

Early menopause

Menopause occurring in women under 45 years of age. Early menopause is often a side effect of some common treatments for breast cancer.

Lymph nodes

Glands in the armpit and other parts of the body that filter and drain lymph fluid, trapping bacteria, cancer cells and any other particles that could be harmful to the body

Lymphoedema

A condition that sometimes develops when lymph nodes have been removed during breast cancer surgery and the lymph fluid no longer drains freely, causing swelling in the arm, hand or breast

Lumpectomy

Another name for breast conserving surgery

Mastectomy

The removal of the whole breast during breast cancer surgery

Metastatic breast cancer

Another term for secondary, advanced, or stage 4 breast cancer

Multidisciplinary Team

Often abbreviated to MDT. A team of health professionals who work together to manage a patient’s treatment and care

Neoadjuvant chemotherapy

Chemotherapy treatment given before breast cancer surgery (sometimes used to reduce the size of the tumour to make it easier for the surgeon to operate)

Oestrogen

A type of female hormone

Partial mastectomy

Another term for breast conserving surgery

PBS (Pharmaceutical Benefits Scheme)

A scheme funded by the Australian Government to subsidise the cost of certain drugs for eligible consumers

Progesterone

A type of female hormone

Radiotherapy

Treatment for cancer using X-rays that target a particular area of the body

Secondary breast cancer

Breast cancer that has spread from the breast to other, more distant parts of the body, most commonly the bones, lungs, liver and sometimes the brain. Also known as advanced, metastatic, or stage 4 breast cancer.

Sentinel node biopsy

identification and removal of the first lymph node to which the breast cancer may have spread for testing by a pathologist

Seroma

Fluid that collects in or around a scar after surgery

Suggestions for OurTNBC?

If you’re a patient, patient organisation, carer or healthcare professional, please let us know if you have any feedback or suggestions for our site.

We will endeavour to answer as soon as possible.


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