Nicole ~ Triple- Negative Breast Cancer and BRCA1

11 Oct 2021

My name is Nicole, I am 34 years old and was diagnosed with Stage 2/3 triple-negative breast cancer three years ago. The only family history I knew of growing up was my grandmother, who passed away from ovarian cancer at a young age. We never really thought about genetic testing or worried about a cancer diagnosis in my family—until a distant cousin that I’d never met reached out and shared that she tested positive for the BRCA1 gene mutation. She thought it could be helpful and benefit our family if we got tested as well.

After this news, mum’s side of the family decided to get tested and unfortunately showed that mum and one of her brother’s tested positive for BRCA1. Because of the high risk of ovarian cancer, she decided straight away to opt for a preventative hysterectomy and surveillance every six months. I was only 23 when she found out, and at that point, I wasn’t ready to know my risk. I was scared because, deep down, I felt that I would test positive too.

When I turned 25, I finally felt that I was well equipped with information and enough research to get the genetic testing. I felt better prepared to handle the results if they were to show that I had the gene mutation. As predicted, I tested positive for BRCA1. Even though it wasn’t a surprise, and I somewhat knew what to expect next, it was still devastating to hear at such a young age, and I was a mess.

Still incredibly young, I wasn’t ready to take such a drastic next step of a double mastectomy. My doctor told me I also wouldn’t have to worry about a preventative hysterectomy yet, as they normally start thinking about that process after 40. So, I chose to make the decision that was right for me at that time. People have different feelings on the matter, but I wasn’t in the right headspace to remove my breasts. I wanted to breastfeed my children someday, so I opted for surveillance every six months, a yearly MRI, mammograms, and checkups with the specialists.

For me, the scans and surveillance were more challenging to deal with than anything else. The unknown was terrifying. I had anxiety attacks and severe mental health issues, which led to hospitalisation. I didn’t feel that I had anyone to talk to about what I was going through, so I kept everything bottled up until it was too much. The stress of waiting for something terrible to happen took a toll on me. I felt like something was going to happen, and it was only a matter of time.

After a couple of years of surveillance, in 2018, my MRI results showed that something wasn’t quite right. I went in for a biopsy and was then diagnosed with triple-negative breast cancer. It was somewhere between Stage 2 and 3 and moved extremely quickly over four months, resulting in six total tumours in one of my breasts. 

I was in shock when I received the results, but I felt that learning how to deal with my mental health issues previously made me a lot stronger to handle this situation. I now had to decide what the next steps were for me. My doctor gave the option of a single or a double mastectomy and informed me that people with the BRCA1 gene have a 40% chance of cancer developing in the other breast. I didn’t want to take that chance, so I opted for a nipple-sparing double mastectomy with a DIEP reconstruction. Three weeks after surgery, I went on to six months of chemotherapy to complete my treatment plan.

Remission for me meant that I would have regular checkups with my medical team each month, then every six months, and cross my fingers that I would be okay. That’s the thing with triple-negative— there is no other treatment available for us, and we have a high risk of it coming back within the first five years. I wanted to get to that point so I could finally feel relief. But it turns out I have one more hurdle to jump.

When I had a nipple-sparing mastectomy, I was told there would be a 2% chance of cancer coming back. I’m still unsure if I’m part of that small percentage, as I was recently diagnosed with Paget’s disease, a type of pre-cancer. Currently, I am waiting on the results to know if it has spread. I’m optimistic, and my specialists don’t believe it has, so there should be nothing to worry about. It is still a constant reminder that we need to be vigilant in listening to our bodies and checking if things feel off.

The scariest thing in this situation was that I never had any signs or symptoms that anything felt wrong. I would be in a very different place if I didn’t keep up with my routine scans and surveillance. I also would have never known about the BRCA1 gene if my cousin hadn’t reached out and discussed our family history. Knowledge is power, and I am so lucky and grateful that they caught my cancer early.

That is why it’s so important to discuss health history with our families. There are many others out there who may not know about their increased risk of breast or ovarian cancer until it’s too late. The more we normalise these conversations, the more people will think about genetic testing and what it means to know their risk. Sharing this information means that you can save someone’s life.

For someone diagnosed with triple-negative breast cancer, it’s easy to feel overwhelmed and isolated. It’s not as common as other types of breast cancer, which means it’s not often spoken about, and information about it is hard to come by. By bringing more awareness to the triple-negative space, we could help a lot of people. That’s why I share my story and will continue to do my part in supporting others with this disease.

This disease awareness campaign has been developed using funding from Gilead Sciences but the content has been independently developed.
Gilead Sciences Pty Ltd. 417 St Kilda Road, Melbourne 3004. AU-COR-0017. Date of Preparation October 2021.