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Our Why

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

Real People, Real Stories

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.

DRAG TO EXPLORE
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Nicollette, VIC

OurTNBC has been created by us because we all found it so difficult to find relevant, accurate information about this form of breast cancer. This is even more pronounced for anyone in the LGBT community, so I wanted to be part of the group to ensure we reflect the diversity of human experience and make sure this site is welcoming for everyone, regardless of how they identify themselves.

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Bonnie, NSW

I have advanced triple negative breast cancer, which is not curable. I joined the OurTNBC Working Group because it’s important that anyone in my situation can also see themselves represented. Hope is important, even at stage 4, but practical support is vital too. You can live well with advanced cancer and I want to be a support to anyone else who is living with advanced TNBC.

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Alex, NSW

Like so many others in the OurTNBC community, I was a relatively new mum when I was diagnosed with TNBC. At a time in life when you want all your focus to be cherishing and nurturing the new life you’ve brought into the world, you find yourself having to focus on your own life far more than you’d planned.

I joined the working group so that I could provide hope to other young mums going through the same thing. I so desperately needed a helpful, positive resource when I was diagnosed and it didn’t exist. I’m so proud of what we’ve created at OurTNBC.

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Stephanie, VIC

I am a young mum and being diagnosed with triple negative breast cancer came like a bolt from the blue. Losing my hair was one of the most challenging parts because it really affected my self-esteem. But it’s important to remember that you will get through this. That’s why I joined the OurTNBC Working Group. Yes, TNBC is tough – the toughest thing you may ever face – but you will get through it. We are here to support you.

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Karen, QLD

TNBC became my “cancer pass card” in February 2021, when I got a call from my GP saying a sentence you don’t want to hear. “I’m sorry to tell you your biopsy results are in and you have breast cancer.”

I’m involved with the TNBC hub because if you are here, then it’s because someone has given you or someone you love the “cancer pass card” and I want you to know you aren’t alone and there are positive stories out there. Here you will find information and you will hear stories of women who have run “the marathon they didn’t train for” and come out the other side having lived through it and living because of it.

Know we stand in solidarity with you and that there is no such thing as a dumb question.

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Ally, NSW

I was 33 when I was diagnosed with stage 2 TNBC. Managing cancer treatment during peak covid times while raising my 2-year-old daughter was one of the most challenging experiences I’ve had.

Being diagnosed with TNBC and going through the very aggressive treatment regime can be overwhelming and challenging. I am therefore part of the OurTNBC Hub with the hope that sharing my story could help support others going through treatment for this disease.

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Angel, VIC

It is so important to have hope and to give others hope. This is why I’m part of the OurTNBC Working Group.

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Melissa, SA

I was diagnosed with breast cancer (DCIS and TNBC) in December 2016 at the age of 36. 2017 was a full year with fertility treatment, a single mastectomy, chemotherapy, a surprise case of appendicitis, removal of a benign lump on my ovary (including removing the ovary) and radiotherapy. I went from never having been admitted to hospital to losing count of the scars and knowing the hospital staff by name. Until my diagnosis I had no idea there were different types of breast cancer or different types of treatment methods. I joined the group to share my experience and to help others know they are not alone.

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Wendy, QLD

I was first diagnosed with TNBC in August 2015 after a routine Mammogram at 45. After a bilateral double mastectomy in 2016, I experienced recurrences in January 2017 and February 2018 so to say I’m an overachiever is an understatement. At the start of my odyssey, I was a single Mum to a 7yr old Daughter and 14yr old Son and they are now 14 and 21 respectively. Understandably this experience had a profound impact and I’m proud to be part of OurTNBC to learn all I can and share my experiences while supporting others who walk in my footsteps. In 2019 I overhauled my life and now dedicate my time to raising awareness of TNBC, the importance of mental health and the power of positivity.

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Pamela, SA

I’m a proud mother and wife. I had made my mission in life to create awareness about cancer among young women because it can happen to anyone. I was diagnosed with stage 3 TNBC at 38 years old in June 2021. I am now out of active treatment after experiencing five months of intensive chemotherapy, a double mastectomy and radiotherapy. Today I’m living my best life; even the bad days are great because I’m still here and alive.
I joined this group because when I got diagnosed, I knew nothing about cancer and sure, I knew nothing about TNBC. If you have been just diagnosed, please know you are not alone… we are right here for you. The treatment is brutal, but it’s worth it. You get to live, and we want you here.

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Hayley, NSW

I was 35 when I was diagnosed with TNBC. With no family history or genetic mutations (that science has found yet!) I was left feeling very scared and alone. Working on OurTNBC Hub is incredibly important to me, knowing that women will have a safe and inclusive space to go to. You are not alone!

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Katie, VIC

I was diagnosed with TNBC in November 2020 at the age of 38 when my youngest was 4 months old. What a rollercoaster of emotions to be told to stop breastfeeding and start the treatment plan immediately. There’s not much time for processing the diagnosis let alone understanding what this aggressive form of breast cancer entails. That’s why we are here! I am hoping that by being a part of this community I can share my knowledge and experience to help create an open dialogue for others.

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Leia, VIC

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Stormy, VIC

I was 32 when I was diagnosed with TNBC. I have no history or genetic mutations, so finding a lump and 2 weeks later being told you have an aggressive cancer was the most traumatic and impactful event I've ever experienced.
I'm part of OurTNBC Hub because I'm incredibly passionate about supporting people who experience this crazy disease. If I can share my own experience and it helps even in the smallest way to remind you that you are not alone, I will know I've done something right.

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Alex, QLD

I was diagnosed with stage 2 TNBC in June 2021 when my baby was 3 months old. I had no idea what hormone receptors and HER2 meant when I was diagnosed, and it was a bit-by-bit process to uncover information about this rarer form of breast cancer. I know what an absolute rollercoaster TNBC can be, so I’ve dedicated some of my time to OurTNBC Hub so that other people with this special diagnosis have a resource just for them.

Our Purpose & Values

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

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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.

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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 to triple negative breast cancer (TNBC).

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Connection

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

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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.

Start typing to see posts you are looking for.

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.


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