Rare Cancers Awareness Day: Tahlia’s story

June 26 is Rare Cancers Awareness Day. This year, Breast Cancer Network Australia (BCNA) spoke with Tahlia to hear about her experience of being a young person with a rare breast cancer.

I’m Tahlia, a 33-year-old single, full-time mum to a beautiful, loving little 5-year-old boy, living in Canberra. I love music – I worked at a live music venue on and off for 8 or 9 years and had such a wonderful time being around some of the loveliest people and enjoying so much of my favourite music live – and art is a particularly big thing for me. I enjoy going to exhibitions and admiring other people's work, and I also enjoy creating my own art. I tend to draw quite a lot, and occasionally paint. It is something I have always felt passionate about. 

From noticing a lump, to seeing a doctor

Last year, in March, I was diagnosed with breast cancer, a week after I turned 32.

A couple of years before. I'd noticed a lump in my breast, but because I had just finished breastfeeding, I just assumed it had something to do with that. Then my Mum was diagnosed with breast cancer. So I thought I'd better go get my lump checked, just in case. At first, my GP said that because I was young, it was quite possibly something like breast fibrosis. The second I mentioned my Mum’s cancer, she had a very worrying look in her eyes, and she immediately sent me to get an ultrasound and a biopsy.

Being listened to 

I feel lucky that my GP listens to me. A lot of people under 40 who go see a doctor to investigate a lump (or something that doesn’t feel right) can often get “pushed out the door” and told “you’re too young”. I'm incredibly thankful my GP has always been very thorough with investigating my concerns. 

That experience taught me that it’s always worth investigating things that don’t feel right in your body. It also made me realise that I hadn't been keeping familiar with my body, which I will now always take seriously. It's so important to know your body. I'm unsure if I would have gone to get my lump checked out if my mum hadn’t been diagnosed with breast cancer. It was really scary finding out my Mum had breast cancer, but thankfully it was caught early. She had a mastectomy, but no chemo or radiation. My Mum has been one of my biggest heroes through this journey – when my hair was coming out in clumps and I was a complete emotional mess, she surprised me by shaving her hair, in support. 

Receiving a rare breast cancer diagnosis 

When I was first diagnosed with breast cancer, it was found to be invasive ductal carcinoma. I then got referred to a wonderful surgeon. He never sugar coated anything, but he had a very kind and gentle approach and nature. He had the suspicion that my cancer was also inflammatory, and took a skin biopsy. Unfortunately he was right.

The treatment was full-on. They went in hard with the type of chemo they put me on, and I had a total of 16 rounds. I also had a double mastectomy, a lymph node clearance, and radiation as well. I lost my hair, eyebrows, eyelashes, and even my fingernails started to lift. It was quite painful and distressing.

Choosing to have a double mastectomy.

I chose to get a double mastectomy, even though the cancer was only known to be on one side. It’s lucky that I did, because cancer was found in a lymph node on the other side.

Because I have inflammatory breast cancer, I didn't get the option of immediate reconstruction because they had to remove as much skin as possible. The reconstruction option I did have would be a big surgery and recovery time would be long, so I decided to not do reconstruction at all. I didn’t want to put my body through anymore unnecessary stress.

Young women can get breast cancer and have mastectomies

I was inspired by topless marathon runners like Louise Butcher in the UK, who has had a double mastectomy flat closure just like me, and Canberra woman Robyn Smith.

I've been topless swimming multiple times, and did the Mother's Day Classic topless. I have a big speech ready to answer anyone who tells me to put a shirt on! Going topless is my way of spreading awareness – showing that young women can get breast cancer. It’s also about becoming confident in my new body, and hopefully inspiring others along the way, I also love the idea of it opening a door to conversation, if anyone wants to ask questions, I welcome that.

I’ve also gotten to the point where I'm starting to feel proud of my new body. I've only worn my breast prostheses about three times, and personally, I don’t like wearing them. They don’t feel like me. Embracing my flat chest makes me feel empowered. This is my experience, my story, my truth, and my body shows it.

Things I wish people understood about living with a rare cancer 

I want people to remember that young women can get breast cancer. People really need to stop saying “you're too young for cancer”, because it does make early detection really difficult. It puts people off going to get checked. 

As for having a rare cancer: yes, technically I have a rare cancer, and there's lots of other cancers that are more common. But if you actually look at how many people have different rare cancers altogether, there are a lot of us. Being told you have a “rare, aggressive cancer” is scary. I remember thinking, “Am I going to die?”. But now I know my kind of breast cancer doesn't necessarily mean death. 

You’re not alone. As much as you might feel like you are, you're not. I’ve found the best people to talk to are others that are going through, or have been through, the same or similar things. I've met a lot of people through online support groups, and in-person meet-ups. It can be really hard talking about your cancer to people that have never been through it because sometimes they don't know what to say, and I don't blame them. Sometimes I worry about making people feel uncomfortable and upset, so I put on a happy face and sugarcoat a lot. I often worry about everyone else's feelings, more than my own. 

When I talk to people that have been through what I’ve been through, I don't have to filter myself. You can both talk about how crappy everything is, without feeling the need to tiptoe around feelings.  

I met someone I call my ‘booby sister’ through an online group. We finished our last chemo a week apart, and then happened to both have our double mastectomies on the same day. We were messaging each other every day, checking in and talking through the things that were the same about our experiences, while learning about the different things we’d had done, too. When you connect with others going through the same thing, it can feel like a sisterhood. 

Learning tips and tricks from others who understand is helpful, too. One example from someone was to get temporary tattoo eyebrows! It was the best thing I bought for myself during treatment. There are so many little but important details like that, that can get lost in the grand scheme of the larger treatment. 

Helping to spread breast cancer awareness, especially to young people 

There are so many amazing health carers, and I have felt so lucky with my whole medical team throughout this experience. But that’s not always the case for everyone. So I want people to remember that just because someone is a medical professional, it doesn't mean they know everything, especially about your body. I also tell friends that if they ever need to see a GP, but feel like they might be dismissed and pushed you out the door, I'll go with them! And I will be help to be their voice, and make sure the doctor hears them.  

A lot of people find out about their cancers too late because a medical professional didn't take their concern seriously, or made assumptions based on their age. I've shared my journey very openly through this whole thing because it is important to me to spread awareness, and when it comes to your health, I want people to feel encouraged to stand up for themselves.