“With my breast cancer diagnosis, I just went straight into action. I'll do all the surgeries, I'll take the medicine, I'll do the treatments, I will do all of that. But when I got the BRCA1 result, it undid me. Because it was my family. I would have preferred it to just be me.” 

Renee was 44 when she was diagnosed with triple negative breast cancer. Toward the end of chemotherapy, she also learned that she had the BRCA1 gene variant. 

The result changed her treatment plan and the conversations that followed, especially as her children grew older and began to think about what it might mean for them.  

Finding a lump and breast density 

Renee found the lump herself. At first, she wasn’t immediately alarmed because her breasts often felt lumpy around the time of her period. “My husband felt it as well. And I said, ‘Don’t worry, I’ve made an appointment with my doctor.’” 

Her doctor quickly arranged both a mammogram and ultrasound, explaining that mammograms can miss some changes at her age. The mammogram didn’t show the lump. It only showed that Renee had very dense breasts. Dense breasts can both increase the chance of developing breast cancer and make it harder to see on a mammogram, because both dense tissue and tumours appear white on the image.  

“You could actually feel the lump, but you couldn’t see it on the mammogram,” Renee says. “It was picked up on the ultrasound.”  

Before her diagnosis, Renee didn’t know much about breast density or how it could affect imaging. Looking back, she is grateful her doctor recommended the ultrasound rather than relying on the mammogram alone. 

How a BRCA1 result changed what came next 

Renee had genetic testing because of the type of breast cancer she had and her age at diagnosis. With limited knowledge of her family history, when she tested positive for the BRCA1 gene variant, it hit hard. “That was probably more of a shock than the actual breast cancer diagnosis,” she says. 

The BRCA1 result opened up new conversations. It was no longer only about her own treatment, but also about what it could mean for her children. “The breast cancer diagnosis obviously was very upsetting, but I think getting the BRCA news was more upsetting because it was not just me. My children could possibly be implicated as well.” 

Before her BRCA1 result, Renee had already had a lumpectomy and was expecting to go on to radiation. “As soon as we got the BRCA result it put something totally different on the table,” she says. After talking through the results with her husband and considering her doctors’ recommendations, Renee decided to have a mastectomy, followed by surgery to remove her ovaries. “We thought, let’s eliminate as much risk as we can just to know that we’ve done all we can to reduce anything happening in the future.” 

Renee’s decisions were informed by her breast cancer diagnosis, breast density, BRCA1 result, and where she was in life. She had already had her children and didn’t plan to have any more. That guided what felt right for her. 

Her children, she says, may one day face very different choices. 

Talking to children about the BRCA1 result 

When Renee was diagnosed with breast cancer, her children were still young, aged 10 and 11.  

She and her husband decided to be honest with them from the beginning. “We did pretty much tell them that day, but I don’t think they really had a full understanding of what was going on,” she says. They also didn’t fully understand what her BRCA1 result might mean for them.  

One of the hardest parts for Renee has been helping her children see that it’s more than simply getting genetic testing. “It’s not just getting a result and finding out yes or no,” she says. “If yes, then you need to assess, you need to look at certain things in your life.” 

For a young person, these decisions can affect many parts of life, including screening, surgery, relationships and planning to have children. Renee knows their decisions are different to hers. They’re about prevention, not treatment, and come at a different stage of life. “I’ve never had that experience myself.” 

Making room for guilt, time and choice 

At the time of the interview, her children had decided to pause testing. Renee welcomed that. “I would like them to be free from that weight for as long as they can.” Over time, that pause has created space for them to start thinking about what testing might mean for them. 

Renee and her family have these conversations openly, often around the dinner table. But that doesn’t make them easy. “I think I am the one that gets very emotional about it because I feel as though I’m the one that’s brought it to the table. There’s a lot of guilt that comes with that.” 

At the same time, she knows information matters. Her children need enough information to understand what testing could mean before they decide whether they’re ready. She holds both truths at once. Knowledge can help people protect their health, but timing is important too. “People need to be able to process it in their own time.” 

Learning from others and staying connected 

One of the ways Renee has prepared for these conversations is by talking to others in the Inherited Cancers Australia (ICA) community. They supported her when she learned she was BRCA1 positive. Now they’re helping her support her children, who face different decisions about prevention than she did. 

Hearing their experiences has helped her think more clearly about how to talk with her children about what lies ahead. “It’s comforting to know there are people that I can go to and ask, ‘what did you do? How did you deal with getting that result at a young age? How did that affect you?’” 

These conversations don’t stay still. As research, information and recommendations continue to evolve, so do the choices people face and the decisions they need to make. Through the ICA community, information sessions, research updates and her voluntary advocacy, Renee has learned more about what affects inherited cancer risk.  

“I like the idea that there are people out there advocating and that we’re learning more and more. That gives me some comfort to know that we’re advancing. And that hopefully if the day comes and my children do get tested and they’re positive, that we'll be much further along.”