Dialog Box

Living with loss and a BRCA1 mutation - Daniella Brasacchio's story

Without an early detection test or prevention options, ovarian cancer continues to impact the health of those who haven’t even got it.

When we think of prevention, we tend to think of light, habitual changes we can make to our lifestyles. But where ovarian cancer is concerned, prevention measures take the form of life-altering decisions. Daniella Brasacchio is a research scientist at Monash University and a member of the Ovarian Cancer Research Foundation’s Consumer Representative Panel. 

Daniella shares her experience of a loved one’s ovarian cancer diagnosis, as well as her own story — one that highlights what it really means to be ‘at risk’ of ovarian cancer. 

 Words by Daniella Brasacchio:

My mother was 53 years old. I was 27 years old, and the youngest of her three children. We were very close. She began to complain of lower abdominal pain and general discomfort including feeling bloated and fatigued. Her GP had referred her to a urologist, and she was awaiting the appointment whilst her symptoms continued. She woke one morning with a golf ball-sized neck gland. A biopsy confirmed carcinoma, further tests confirmed a tumour, similar in size to a grapefruit was in her abdomen. She was then diagnosed with stage IV ovarian cancer. 

And so began her battle for life, a lengthy fight over six years — and she did fight.


Discovering a BRCA1 mutation

During this period, we discovered we carried a BRCA1 mutation in our family. Unfortunately, I inherited this mutation from my mother too. What did this mean? 

I realised my chance of developing breast cancer was approximately 70%, and chance of ovarian cancer 44% higher than average."

Screening for breast cancer commenced when I was 30 years old with bi-annual MRI scans to detect any tumour mass growth. However, I had no screening options for my ovaries as none existed.

This was 2008, and we are now in 2022 and there are still no screening options for women who fall into a high-risk category of developing ovarian cancer. With my anxiety levels increasing annually, the ultimate decision was made. 

Undergoing preventative surgery

After having had my son in 2017, in 2020 at 39 years old, I chose to have a complete hysterectomy and bilateral salpingo-oophorectomy. Noting that I had also had my breasts removed at 32 years old, this was the final step to be taken to reduce my major cancer risks associate with my BRCA1 mutation.

Post-surgery I immediately entered the menopause and required Hormone Replacement Therapy (HRT), specifically estrogen, to manage symptoms and health related risks associated with premature menopause. I was struck by the sudden onset of symptoms including depression, sleeplessness, lethargy, and hot flushes. The continued adjustments to my HRT to manage my quality of life are monitored and managed with a medical team who are considerably experienced in this area. I am thankful I have access to these wonderful women who are not only experts in hormone management but extremely empathetic towards my age and lifestyle. 

The long-term impacts

I am only 41 and have a four-year-old child who is non-forgiving to a mother who may have not slept well, is lacking in energy some days or is unable to focus on the odd occasion. I will have to continue to be monitored for more serious health associated risks with menopause including cardiovascular, cognitive and bone health.

I have minimal external scars from the surgery, and my anxiety has been reprieved from the thoughts of receiving an ovarian cancer diagnosis. But it took me six months to recover from the surgery and understand what menopause is. I manage HRT to the best of my abilities and have adjusted my lifestyle to factor in my physical status of being menopausal, even though I am only 41. I am a strong-willed positive individual, but this has worn me down somewhat. I feel tired. I am tired.

From the external onlooker I am only slightly physically scarred, but internally I know I have no natural breast tissue, no uterus, no ovaries. Yes, I feel less feminine.

I am much more fortunate than my mother, and many others who have experienced or are experiencing ovarian cancer. Yet more research is required to enable earlier detection and screening. I should not have to feel like I do. I am too young to have experienced this and to have to manage this. More focused and direct research is required for prevention, for screening.

We deserve to have a choice.

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23 February 2022
Category: Blog
Tags: brca1, cancer screening, menopause, ocrf ambassadors, ovarian cancer, ovarian cancer risk, prevention,