“New breast cancer drug capivasertib is allowing me to live life to the full” – Elen’s story
Elen Hughes was first diagnosed with primary invasive lobular breast cancer in 2008 at the age of 37. Eight years later, her cancer returned and spread, and she has been on a rollercoaster journey ever since, experiencing the highs of remission and the lows of numerous relapses. Since February 2025, she has been treated with the drug capivasertib, the discovery of which was underpinned by research at The Institute of Cancer Research. She is now doing well and feels hopeful for her future.
At the start of 2008, life was perfect. I had met my second husband, Trevor, a few years previously and we were incredibly happy. I had two children from my previous marriage and the son we had together, our ‘surprise baby’, was just about to turn two. We were having the time of our lives.
Then, one evening while we were watching TV, my hand brushed across my breast, and I could feel a lump. Having trained as a nurse, I was aware of what this could mean and I instantly had a feeling it could be cancer. My mum had been diagnosed with breast cancer in 2001 when she was 59. At the time, I just accepted it. She was the first one in the family to receive a cancer diagnosis, so alarm bells did not really ring at the time. But now they were ringing.
I was referred to the breast clinic within a couple of weeks. A mammogram showed nothing, but a biopsy revealed that while the lump itself was harmless, there were cancerous cells present just behind it. It was devastating news at the time. I remember wondering whether I would see my son start school or watch my children grow up. It took a while to shift those thoughts from my head.
I had a double mastectomy and reconstruction, but no further treatment was needed as I was deemed at very low risk of recurrence. There was no genetic link found to my mum’s cancer and having seen how well she had done, I was able to adopt a positive mindset. In my mind, I had had my brush with cancer, as so many people do. Now, I could get on with enjoying life.
Thankfully, I was able to do exactly that, cancer-free, for the next eight years.
‘My journey was starting to feel like a rollercoaster’
But in 2016, I developed what felt like a frozen shoulder. My breast reconstruction had involved taking tissue from my muscles and back, so I was used to aches and pains in my shoulders. But this time, it was not getting better. I was also experiencing some vaginal bleeding. An X-ray revealed that I now had cancer in my bones and further tests showed that it had spread to my cervix too. I had always thought that metastatic cancer would appear in the brain, lungs and liver. Even as a nurse, it had never occurred to me that lobular cancer can come back in other areas of the body too.
I was treated with intravenous chemo (epirubicin and cyclophosphamide), followed by tamoxifen, during which time I was in remission. I was able to enjoy four and a half years of peace.
But in 2020, I started to suffer with stomach pain. I found that I could only eat very small amounts before having cramps and vomiting. I knew this wasn’t right and an endoscopy revealed that the cancer was now in my stomach. I was put on letrozole and palbociclib, but the palbociclib did not agree with me. Due to the side effects, my drug regime was changed: I took abemaciclib with letrozole instead and this thankfully worked for another three years.
My journey felt like a rollercoaster. Every setback seemed to catch me unaware and every disappointment seemed worse than the previous one. Despite this, each time I went into remission, I felt hope that this time the cancer was going to stay away. I was going to be the one to beat it – I was going to be the outlier whose cancer was not coming back. But it was like a game of Snakes & Ladders – each time a new diagnosis came, I was thrown back down and had to start all over again. To this day, I suffer with an element of health anxiety – and I think most cancer patients will say the same. I tend to fixate on every ache or pain, fear the worst with every headache or bout of illness. You become very paranoid and it is mentally exhausting to live like that.
In February 2023, I spent a lovely weekend with my daughter in Chester and arranged to meet a friend for the first time who I had got to know on social media thanks to our shared cancer experiences. We had a lovely meal, but the following day, I became very ill. I felt sick and had terrible pains in my bowels. Initially, I suspected it might be food poisoning. But I was in agony. I had the choice: go to hospital in Chester or try to make it home to Anglesey. I chose the latter, but the train journey home was horrific, the pain was so great.
‘It was absolutely devastating to be told the cancer was back’
Of course, it crossed my mind that my cancer had returned. By now, I was so in tune with my body and the patterns of this disease. My gut feeling was that it was back, I just wasn’t sure where. I thought it was in my kidney, but I ended up hospitalised with an emergency bowel obstruction. I had to have emergency surgery, after which I was extremely poorly and it took a while for me to recover. I was then put on the chemotherapy drug capecitabine, which worked well for two years. I could ease myself back into life.
The thing about this progressive disease is not just having to deal with the cancer coming back each time. It’s the other fears too. You feel scared about each treatment, scared of the side effects, especially as each treatment seems more aggressive than the previous one. You have the fear that it’s not going to work. It takes a while to build your confidence after each relapse, to trust your body again and get over it.
I knew that if I could get two good years out of the capecitabine, I was doing well. So, when I went for a routine scan at the end of January 2025, I was on high alert, despite having no symptoms. It was absolutely devastating to be told the cancer was back, once again in my bowel. It is incredible how, in the 20 minutes it takes to have your consultation, life can switch from being fine, good, brilliant to being uncertain and full of fear. In a matter of moments, you are in the depths of despair and must start all over again.
‘Capivasertib has given me hope’
I was fortunate in that I was able to access the drug capivasertib privately – and for me it has been brilliant. I felt so much better physically within just four weeks of taking it. I have had no side effects, and it is much kinder than previous drugs I have been on. It is the only drug I have ever been able to take at the recommended dose without needing any adjustments. It has not affected my energy levels and my cancer markers are down. My doctors say it is working and I feel that it is too – I feel so well.
My nurses have described it to me as ‘groundbreaking’ and a ‘gamechanger’ – and it has given me hope. I would like to get at least two good years out of it. Hopefully, that will give me enough time to enjoy my life and by the time it stops working there will be something else available that can help me. I have been in remission previously for four and a half years, so that would be what I would hope for on this too.
I have a fabulous life. I love gardening and walking with my dogs. This drug is enabling me to continue living that life. I feel privileged to be able to carry on and live as normal.
If I was to compare where I was at the beginning of my cancer journey to now, I can see that so many things have happened, so many new drugs have been developed. These new groundbreaking treatments have given me hope. When I was first diagnosed with breast cancer in 2008, my youngest child was a toddler. I never expected to see him go to school. Now he is about to go to university and I have seen my daughter get married.
‘I know my cancer isn’t curable, but it feels treatable’
I have spent such a long time believing that I was dying, making preparations for my departure. But now I am more positive mentally. I feel as if I am living with a chronic disease, rather than a terminal one. I know my cancer isn’t curable, but it now feels treatable. I can now accept that and take ownership of it. It is less exhausting to think about it that way. Instead of fighting it, I accept that I have rather intrusive neighbours living inside my body, but I can enjoy life and have hope.
I also feel more motivated than I have done in a long time. I am trying to keep myself busy and have a newfound purpose. I want to start a podcast in Welsh so that cancer patients in Wales can feel like a supported and connected community. My intention is to create a website to go with it, full of helpful information and links to useful organisations. I also want to start an online shop selling items that I found useful during my cancer journey: soft eye masks, cotton caps (I had never expected my bald head to feel so cold during chemo) and organic lavender pouches. This will give me a purpose and if it does some good too, all the better for it.
I would not want to go on intravenous chemo again. I know that my husband would want that for me if it was the only treatment available, but I don’t think I could face it. Capivasertib is allowing me to live my life to the full until hopefully another drug becomes available. And now that it is available on the NHS too, it will give many more women like me hope.
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