"It was only through my two sisters having cancer that I discovered my genetic status"

10 April 2019

Lorraine Benn is the youngest of four sisters. After the eldest two were diagnosed with ovarian cancer, she and her sister Susan elected to have hysterectomies as a precaution. Following this surgery, Lorraine’s histology results came back showing that she had ovarian cancer. Convinced it must be hereditary they pushed for genetic testing. While waiting for the result, she had preventive screening for breast cancer, and was diagnosed with this too. She later discovered she carried the BRCA2 mutation.

“30 years ago, my eldest sister Anita was diagnosed with ovarian cancer. Then 13 years ago, my second sister in age was diagnosed with the disease too. My father had also died of cancer when I was young, so we were thinking, ‘that’s 3 people who’ve died of cancer in our immediate family’. 

Because of the family history, my next eldest sister Susan decided to be proactive and approached a consultant who agreed to carry out a hysterectomy for her as a precaution. She then encouraged me to go ahead with the preventive surgery too. 

I had doubts about having the surgery, I thought, ‘is this a bit drastic?’ Lots of people asked me why I was doing it and told me a hysterectomy would have such a big impact on my life and my job. But luckily I decided to go ahead and I can’t even begin to imagine the impact if I hadn’t had it done.

Just a month before surgery I had a CA125 blood test and the results came back within the normal range. My pre-op ultrasound also appeared normal. However, following the surgery, the histology report showed I had a tumour in one ovary and cancerous cells in the other. 

Now that three sisters had been diagnosed with ovarian cancer, Susan was convinced it must be hereditary and pushed for genetic testing, while I underwent treatment.  

"A year later, on my mammogram, I was found to have breast cancer"

Lorraine Benn

We were told if we had a BRCA gene mutation, we would likely have a very high risk of breast cancer, so we were offered preventive screening while we waited for the results, because we weren’t yet old enough to be eligible for routine mammograms on the NHS. 

A year later, on my mammogram, I was found to have breast cancer. As with the ovarian cancer, it was at a very early stage. I couldn’t feel a lump and nor could they, so without the preventive screening, it was unlikely to have been found until later on.

The same week, I also got the news that I had the BRCA2 mutation. Susan’s result came back negative.

I’d never heard of BRCA mutations —it was only through my two sisters having cancer that I discovered my genetic status. But by this point they had sadly passed away.

I’m just so grateful that my other sister Susan had been proactive and started pushing for genetic testing. It’s so important to be aware of your family history - in particular with the ovarian cancer, if it hadn’t been diagnosed when it was, my prognosis probably wouldn’t have been as good. It could have been a completely different picture for me. 

It’s not something you want to hear. It’s not something you want to have to deal with, but BRCA testing is now available and it’s just a blood test. I just think knowledge is power. If you’re aware of your genetic mutation, you’re in a far better position. I have two children, and I knew that if I could prevent them going through the experiences that we had, I had to find out.”