Melissa ~ Triple- Negative Breast Cancer and BRCA1

11 Oct 2021

My name is Melissa, I am 39 years old and was diagnosed with Stage 1 triple-negative breast cancer just over a year ago. Before my diagnosis, I learned that breast cancer was common on my dad’s side of the family; it started with my Great Grandmother then my Grandmother. With that information, I knew I had to look at my health from a different perspective and opted to get genetic testing in 2016 after some encouragement from my cousin, who also had the BRCA1 gene.

The results showed I was positive for the BRCA1 mutation, which meant that I had an increased risk of developing breast and ovarian cancer at some stage in my life. Knowing this, I was angry and disappointed in my body. I felt ashamed and guilty. It scared me and affected my mental health more than ever. At that moment, I regretted ever being tested.

Once the news sank in, I realised getting the genetic testing was the best thing I could’ve done for myself. I could now better plan for my future and get the resources necessary to figure out the next steps. I wanted to do everything I could to look after my future.

In 2017, I decided to get my fallopian tubes removed to reduce my risk of ovarian cancer, and next year I will have a hysterectomy. Many women also opt to jump all in and get a double mastectomy when they know they have the BRCA1 gene—but I was still on the fence about it, and I wasn’t ready. So, I made the call to hold off on it as the best choice for myself at that time. That’s what women need to remember; it’s about making the best decision for themselves at that moment, and whatever option you go with is OKAY. Even if family or friends don’t agree with it, you need to do what’s best for you.

Over the next few years, I was hypervigilant and made sure I was diligent with self-examinations, MRI’s, screening, and going to all my follow up appointments. I didn’t want to miss anything.

After each scan, the doctors never found anything wrong. It seemed like I would be in the clear until my most recent check-up in 2020, which showed an abnormality in my right breast. I went through 7 biopsies and was finally diagnosed with Stage 1 triple-negative breast cancer.

It felt defeating. I thought I had done everything right in the years leading up to diagnosis. I was fit and healthy, running marathons, going to my routine check-ups. But it wasn’t enough. My doctor said that because it was the most aggressive breast cancer, it didn’t matter how well I looked after myself— someone with the BRCA1 gene is always more susceptible to getting cancer.

The next step was to make a treatment plan. As someone who rushed to Dr Google before knowing what I needed (I wouldn’t advise it!) I thought it would be like any other breast cancer, and I could have a lumpectomy and radiation, and I would be fine. Unfortunately, this wasn’t the case. I’m grateful that my specialists and cancer care team were incredible and made a plan of action straight away— which would include 16 cycles of chemotherapy, a double mastectomy, and eight months of oral chemotherapy. Even though they caught my diagnosis early, the aggressive nature and fast growth rate of triple-negative meant that it would still need to be treated this way to ensure the best possible outcome.

I feel like those with triple-negative get a bad deal. There is not much information out there, or it is hard to find. My breast care nurse even had to research it while looking after me—it’s just not talked about enough as it isn’t as common. Being diagnosed with any form of cancer is bad news. However, triple-negative commonly affects younger women under 40 who have the BRCA1 gene, and there still aren’t more advanced treatment options other than chemotherapy and surgery. Sometimes the chemo doesn’t work either—these are things people need to know.

Once you’re in remission, “life after cancer” looks a little different for us.  There is no post-cancer care plan, and you’re left to figure it out. I organised a psychologist for my mental health, an exercise physio, and a dietician to get myself back on track. You also have to stay on top of yearly checks ups, think about reconstruction and hysterectomy (if that’s what you want) and get mentally well again as a priority.

Though my doctor wasn’t concerned about a recurrence with my case, if it happens, it’s usually within the first few years after treatment. This sometimes plays on my mind, but I try to take it one day at a time.I also thought I would bounce straight back to normal, but that isn’t the case. It’s a work in progress. 

My advice to others diagnosed or testing positive for BRCA1 is don’t give up. Find yourself a great support community like Pink Hope, go to every appointment, and be vigilant about your screening. One of the positives to this experience for my family was that it prompted more of them to get genetic testing, and friends with family histories are now seeking out testing as well. I’m grateful that sharing my story can help others that are facing a similar situation. Knowing your risk is so important and could save your life!

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.