After losing her mum to ovarian cancer, Naomi discovered she had inherited an altered BRCA2 gene which increases her risk of breast and ovarian cancer. She wants to do all she can to decrease her risk, but she is apprehensive about surgery.

A picture of Naomi and her mum taken in the early 90s. Naomi, a toddler at the time, grins widely next to her mum, Juliette. Both of them have short, dark curly hair.

We didn’t know the link between breast and ovarian cancer

In 2014, I lost my mum, Juliette, to ovarian cancer.

The tragic thing about ovarian cancer is that it often doesn’t present symptoms in the early stages. As such, it was already fairly advanced when my mum was diagnosed in 2009.

She had an operation and then several rounds of chemo over a few years. We knew that it would likely come back as they hadn’t been able to remove it all in the initial surgery, but nothing prepares you for when you realise there’s nothing more the doctors can do.

Before she died, we discovered she had the BRCA2 genetic alteration, which meant she had a higher risk of breast and ovarian cancer. The mutation is more prevalent in people with Ashkenazi Jewish heritage, which my mum had.

She’d actually had a mastectomy around 1991 when I was very little. She always said it was an easy decision for her to make. She heard the word ‘cure’, and she did what she thought would be best for her and her two children.

However, at the time, the connection between breast and ovarian cancer wasn’t as widely known, so she didn’t go through any additional screening.

For most of mum’s life, she had no idea she was at a greater risk. I think about this a lot.

I also carry the altered BRCA2 gene, and I know I have some choices to make

After mum died, I found out I also have the altered BRCA2 gene. This means I have an 80% lifetime risk of breast cancer and around a 20% lifetime risk of ovarian cancer.

I am grateful that I found out I had the altered BRCA2 gene when I did. I was about 30 when I got the news, whereas my mum found out about it when it was already too late. Of course, that means the risk is always on my mind, but I am grateful to have this awareness and also to be able to access screening.

I am now facing big decisions about surgery. When I really think about it, I can’t deny it scares me - but not as much as the thought of being in the dark about this or taking no action.

The way I look at it, if I can show the same strength that my mum did in surviving this disease for as long as she did by removing the things that could cause it, I will make myself and my family proud.

I’ve been doing what I can to prepare for any eventual surgery

I’ve already spoken with the breast unit at my local hospital and met with a plastic surgeon, plus had a call with a psychologist to assess whether I am in the right headspace about everything. Once I decide to have the surgery, I’ll need to have that assessment again.

I’ve been to an open evening organised by Breast Reconstruction Awareness, which gave me the opportunity to speak to women who have already been through mastectomy and reconstruction. I also know of an organisation called Keeping Abreast which has a network of support groups for people who have had or are contemplating their options.

I want to make sure I fully understand the possible emotional and physical trauma of going through this. I also need to prepare myself for the recovery time.

I'm sure that, when the time comes, I won’t be so matter of fact about it. I’ll grieve the loss of parts of my body and be worried about what I will look like, how I will feel. I also know I'll need a support network, and to feel my mum guiding me. But I’m stronger than I think I am. We all are.

It's important people know about genetic risk

For those who suspect they might be at increased risk of breast cancer, I can only encourage you, gently, and with your best interests in mind, to talk to your GP.

I’ve got two daughters: a nine-month-old and a six-year-old. I want to be transparent about them possibly being carriers of the altered BRCA2 gene, but I have decided to wait until they are adults to tell them. I don’t know what they could do with that knowledge before they are 18, anyway, and I don’t want to give them an undue level of worry.

Hopefully, by the time they are old enough to know, it won’t be such a life-changing issue.

You can find out more about Naomi and keep up with her story by following @eatsleepgrieverepeat on Instagram.

 

If you have a genetic mutation or breast cancer diagnosis and want to speak to someone about possible mastectomy worries, you can talk to somebody who has been through a similar experience by getting in touch with our Someone Like Me service.

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