Sonia Bhandal was just 14 when she lost her mum to secondary breast cancer. Then at the age of 28, she found a malignant lump in her own breast. Shortly afterwards she discovered that she carries the BRCA2 gene mutation, putting her at an increased risk of developing various cancers. Today, exactly 29 years since scientists at The Institute of Cancer Research, London, identified the BRCA2 gene, Sonia, now 36, shares her story.
My mum was diagnosed with breast cancer when I was eight. I remember being picked up from school by family friends and thinking it strange that neither of my parents had come to get me themselves. When they collected me later that evening, they were very quiet during the car ride home. They gathered me and my two older sisters together and told us that mum had been diagnosed with breast cancer. My sisters immediately started crying – and although I did not fully understand what we were being told, I knew from their reactions that it was something bad.
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My mum had full-on chemo and I watched her fight hard over the next six years, but the cancer kept coming back. She sadly passed away at the age of 48 when I was 14. Then six months later, we lost my aunt, my mum’s sister, to cancer too. The impact of losing two mother figures at a young age and in such a short space of time was enormous.
A few years later, when I was around 22, my eldest sister announced that she wanted to get gene-testing done. Being 10 years older than me, she had recently become a mum to two boys, and given our family history, she felt it was important to know whether she was at an increased risk of cancer. At the time, I was quite naive and not very educated about these things. I was not ready to face the reality of an unfavourable outcome, so I turned down the opportunity to join her for testing, deciding that I could always go ahead and do it later if I wanted to.
In hindsight, this is a decision I deeply regret. While my sister discovered she did not carry any BRCA mutations, I was to find out later that the same was not true for me.
I missed my mum desperately and craved the connection with her. Yet despite losing her, it never crossed my mind to check my breasts regularly.
Then, during a trip to New York when I was 28, I rolled over one night in bed and as my arm brushed against my breast, I felt a lump. It was hard, like a stone, and there was a tenderness there too. I remembered my mum always saying to me that if I ever felt a hard lump in my breast, I needed to get it checked. Of course, I tried to convince myself that I would be fine, but in my gut, I knew something was wrong.
‘Being told I had breast cancer was a shock’
When I got back to the UK, I went to see the GP. Initially, I was told it was unlikely to be anything sinister. It was probably hormonal and would disappear in a few weeks. The doctor suggested I should return if the lump was still there after my next period. I went away with the gut feeling that something wasn’t right. My period started a few days later and when the lump was still there afterwards, I returned to the doctor. This time, I was told that due to my family history of breast cancer, I would be referred for immediate testing.
Being told I had breast cancer was a total shock. Memories of my mum and her cancer journey came into my head. I was filled with thoughts of death and dying, terrified of playing out mum’s story. My diagnosis was also tough for my dad and my sisters who had seen my mum go through all of this before.
Within a week, I had started chemo and this lasted a gruelling six months. I had very long, thick hair at the time and it started falling out almost immediately. After the first week of treatment, I cut it to a short bob and donated my cut hair to the Little Princess Trust. Shortly afterwards, I was forced to go even shorter to a pixie cut. Then, about 10 days after my chemo started, I met a friend for lunch and could see the look on her face as my hair dropped out and fell all over my jumper. That night, my sister helped me shave it all off. She was such an enormous support to me.
‘At times I felt like a ticking time bomb’
Given my young age and my family history, it was suggested that I should be tested for a BRCA mutation, so at the same time as going through treatment, I also went through the process of genetic testing.
Discovering that I was BRCA2-positive was like a double-edged sword. My breast cancer diagnosis had brought with it a lot of ‘what ifs’: I wondered whether maybe I had brought this cancer on myself due to a bad diet, for example, or too much partying at university. The discovery that this was all genetic calmed that noise down a little and I felt a sense of relief that it would have happened anyway – this was not my fault.
But it also came with extra pressures. At times, I feel like a ticking time bomb, and I struggle with that a lot of the time. I am now being advised to remove my ovaries to avoid the risk of ovarian cancer and am under pressure to start a family sooner rather than later. But while I want to live my life on my timescale, becoming a mum when I am ready, I am also scared of having regrets, of leaving it too long and risking a fresh cancer diagnosis.
Once my chemo was complete, I was offered surgery. I was told that due to my BRCA2 status, the risk of my cancer returning was extremely high, so it was a no-brainer for me to opt for a bilateral mastectomy. I did not want to risk another diagnosis of breast cancer further down the line, nor did I want to go through chemotherapy again.
However, surgery was not an easy option. I was incredibly unlucky to experience lots of complications and spent over six weeks in hospital. I developed pneumonia and could not walk or talk due to infections where my body wouldn’t heal. The chemo had worked well to eradicate the cancer cells, but it had left me weak, and my body struggled to recover. My abdominal wall collapsed and I had to have it reconstructed. My family didn’t know whether I would make it home alive.
‘Adjusting to my new body was extremely tough’
Thankfully, I was eventually able to come home – and the good news was that I would not need radiotherapy. However, while I was doing better physically, mentally I was struggling. Adjusting to my new body and all my scars was extremely tough – and when my relationship broke down too, I really hit rock bottom. It was hard not to doubt myself and I found it difficult to believe that the way I looked had not played a part in my relationship ending.
I worked hard to build myself up. I made a list of 30 things I wanted to do before I was 30 and found a cancer community on Instagram, which gave me great comfort. I gained a new perspective on life and made myself more of a focus. I felt a new-found freedom to simply be me, to put myself first, to be my true, authentic self and not feel guilty about it.
I moved into my own place and in 2020, met a new partner who is now my fiancé. He has been wonderful and has accepted me exactly as I am – we are due to get married next year.
I was initially put on Tamoxifen with the intention of being on it for 10 years. But I experienced terrible side effects, including extreme premenstrual dysphoric disorder and depression, so I came off it after just under five years. This was a very difficult decision for me. Of course, I worry about the risk of cancer returning, but I also know that I need to have a decent quality of life.
‘I now feel optimistic about the future’
This year marks eight years since my diagnosis and I am thankfully well with lots to look forward to. Having almost faced death, I now feel optimistic about the future.
I have no doubt that it is thanks to cancer research that I am here. The knowledge and the statistics that were shared with me at the time of my diagnosis allowed me to make educated, informed decisions – opportunities that my mum did not have.
I know that so much new research and development has taken place since my mum was diagnosed – and I feel lucky to have benefitted from treatments that were not available to her. I am all for further research that will help women in the future face a cancer diagnosis. We need to make sure that we continue to make things better.
It is also so important to accept genetic testing if you are offered it. In hindsight, I wish I had agreed to get tested when my sister suggested it. That said, I am a believer that everything happens for a reason and I am at peace now that my story was meant to be the way it is. But being better educated and having more awareness is important – we should not be afraid of having serious but scary conversations.
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