Natasha’s Story

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NICE supports the ROCA Test

We are the only test for surveillance with demonstrated accuracy, as assessed by NICE (National Institute for Health and Care Excellence)

I was 36 when I was diagnosed with breast cancer. It was 2014. This was an awful shock at the time, I was very fit and felt too young. However, as I came to terms with it all, I became very determined to carry on with my normal life as much as possible; I continued to exercise, socialise and kept working around treatment. The chemo was incredibly hard, a physical and mental challenge. The first chemo was the worst. It felt like I’d drunk a bottle of bleach. After six rounds of chemo, the cancer had shrunk so small that the hospital suggested one final round and they would then do a lumpectomy (remove the tumour only, preserving my breast). That was the plan.

During the chemo, I met a woman who also had breast cancer. She told me about ‘BRCA’ and how mutations in this gene can increase the risk of developing breast cancer. At that time, I’d never heard of it, and no one at the hospital had suggested I get tested for this. However, I decided to explore getting tested.

A week before the lumpectomy I got the result – six months after getting the test done. The result confirmed I had a mutation in my BRCA1 gene. My doctors then changed their minds and suggested I have a double mastectomy because the cancer was highly likely to come back. I was also advised to have my ovaries removed as soon as possible due to the BRCA1 gene mutation giving me a high risk of developing ovarian cancer too. This was not something I was ready for. I was in my mid-thirties; I wanted to have a child and was not ready to start menopause so young. I was advised against any delay but felt that I needed to make this choice for myself.

After my double mastectomy, my consultant suggested that I contact Mr Rosenthal, who was offering the ROCA Test. I went to see Mr Rosenthal, learnt about the test and opted to take it privately. It was not available on the NHS. The experience of having the test itself was fine. At the beginning, receiving the results letter on my doorstep was terrifying because I was so used to getting horrible results.  However, it was really helpful getting the information. I got a chart showing my risk, a number like ‘1 in 1000’ and a range from high to low. I was able to see where I was on the chart. I always stayed at the low end and this was really reassuring for me. Knowing that my risk at that time was one in however many thousand, was something I could live with. I would always ring my mum and say, okay, it’s this, and I’m here.

A year or two after my breast surgery, I met my current partner. I shared everything about my cancer and my diagnosis of BRCA1 mutation. We talked about wanting a family and discussed options. Four months into my relationship with him, the week before I turned 40, one of my ROCA Tests came back slightly raised. I initially panicked thinking this is it; it’s happening again. However, my friend asked me if I had taken a pregnancy test? I did one. And I was pregnant! However, the day I turned 40, I miscarried. But I remember thinking: I got pregnant; this is incredible; it can happen again. After my chemo, the doctors told me that I had a 2% chance of getting pregnant, I had hope. So, I spent the next six months having acupuncture, and putting as little pressure on myself as possible, just falling in love with this man, being happy, travelling and enjoying life.

A few months later, I noticed that I was occasionally getting breathless, and I was struggling more when I was running. I had an MRI scan on my upper body and the doctors thought there was something on my spine, I spent the next six weeks having various tests to rule out cancer. Something showed positive in my ovaries and I was referred to University College London Hospital for a scan. I remember being with my boyfriend, my mum and my sister, we were all scared. Then I got the news. It wasn’t cancer. I was pregnant again!

I gave birth to a baby boy at 41.

My doctors started to advise me to have my ovaries out again now that I had had a child, but I still wasn’t ready. I wanted my body to mend and get strong again after labour and to enjoy being a new mum. At that time, I also had the opportunity to receive the ROCA Test via an NHS supported clinical study called ALDO. I jumped at this chance.

Then when I was 44, I had one more slightly raised ROCA Test again. I spent a week in Spain on holiday thinking this feels different now, because I’ve now got my little boy. I was beginning to notice my periods getting a lot lighter and my body was feeling a bit different, I started to have some hot flushes and my sleep was disturbed. I felt that I must be in the peri-menopause. After doing a lot of research and talking to my family and friends, I decided I felt ready to have the surgery the following year.

Since surgery I have felt a mix of relief, and sometimes sadness, that I had to make that decision. I am so grateful that the ROCA Test existed. I would have hated to have gone through the surgery any earlier. It gave me time to try, and successfully, have a child and to keep my estrogen for as long as possible; surgical menopause is hard work. Being told that you don’t have a choice is horrible. I needed to feel I had that choice. Finding out that the ROCA Test existed made me feel that I had an option and that option gave me time and control.

My key takeaway from my 10- year journey: Yes, the doctors are brilliant; they give the best clinical advice. But listen to yourself too, know yourself and trust your own judgement. That way you will find the best path for you.