'I was told my cancer was terminal nine years ago, but that is not the end'

A woman who was first diagnosed with cancer in 2008 at the age of 37 fought it off but was told nine years ago that the disease was back - and it is terminal. Elen Hughes, 54, says that far worse than the diagnoses and the treatments is the feeling of isolation and loneliness - and the fear of leaving her family behind.

Elen, who is married with three children, was first diagnosed with primary invasive lobular breast cancer in 2008 at the age of 37. She found a lump in her breast and having trained as a nurse, she was aware of what it could mean. Her mum had been diagnosed with breast cancer in 2001 when she was 59.

Elen, from Anglesey, was devastated at her diagnosis. Her youngest child was just about to turn two, and she wondered whether she would see him start school or see her children grow up. She had a double mastectomy and reconstruction, but no further treatment was needed as she was deemed at very low risk of recurrence.

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Elen, who is now semi-retired but worked as an NHS nurse and in social care for 30 years, said: “It was a big op and it did take a few months just to get myself back on my feet physically, but it took much longer to get back on my feet psychologically and emotionally.

“You get thrown into this world that you don't want to be part of at all. The first few weeks there was a big flurry of appointments and waiting and then when things quietened down a little. What I found was that even seeing my children would actually make me cry an awful lot. I had such a strong fear that I would be leaving my children and my husband and my family behind.

“That was the thing that I struggled with most.”

Post-operation, Elen’s prognosis was good, the cancer had been contained and the operation was successful. She didn’t need any chemotherapy and went back to work.

But in 2016 Elen started suffering from a frozen shoulder. Elen was offered an X-ray, but was totally unprepared for what came next: a diagnosis of incurable stage four cancer.

“The conclusion of the X-ray was that although I did actually have a frozen shoulder, my bones were actually covered with enumerable bone metastatic disease, and the assumption was that it was from the breast cancer, which it did turn out to be,” said Elen. “That was when my world actually did collapse, probably for about three months, where I would describe myself as almost catatonic.

“I just wasn't able to function, I wasn't able to think clearly, and the overriding emotion was feeling extremely lonely in this world I never chose to be in. I didn't know of anybody at my age who had actually gone through anything similar to this.

“It was classed as a terminal diagnosis with no cure, but there are ways of managing it, and that was the part that my brain couldn't actually get around to see. Because to me, I went straight from life to death with nothing in between, and I was planning my own funeral and trying to get my finances in order.”

Elen then came across top oncologist Dr Greg Wilson, who worked in The Christie Hospital in Manchester. He reassured her that her condition was treatable and that she didn’t need to fear the worst case scenario.

“From our first meeting, he actually made me feel safe, and that is priceless in the world of stage four because there's not a second initially that goes past without feeling some sort of fear for the future,” says Elen. She was treated with intravenous chemo, which worked well.

“I did actually manage to work through the majority of the chemotherapy with a lot of support and being kind to myself,” Elen said “But I didn't recognise myself. It made me quite ill, so I was losing weight and didn't look myself. You would never believe that you could go from being a fit, active mother of three to being a patient that needs to be monitored extremely regularly.

“Your life actually seems to circulate around the cancer. This overwhelming fear of leaving and this overwhelming feeling of being alone and not having the voice to actually be the voice of reason. Nobody was able to reassure me much further than two to three years, which was actually the initial prognosis that I was given.”

The chemotherapy was followed by tamoxifen, which enabled her to enjoy four and a half years in remission. However, on a holiday in Bilbao in 2020 with her husband, Elen suddenly felt severely unwell.

She ended up in hospital having her appendix taken out because it had become gangrenous due to the cancer obstructing the blood supply. Doctors broke the news that the cancer had spread to Elen’s stomach and cervix.

A new drug regime worked for another three years. But in February 2023, Elen became ill again. She was heartbroken to be told the cancer was back, this time in her bowel. She had emergency surgery for a bowel obstruction and was put on another chemotherapy drug which worked well for two years.

But a routine scan in January 2025 revealed the cancer was back, again in her bowel. In the 20 minutes it took to have her consultation, Elen’s life switched from being great to being uncertain and full of fear.

In a matter of moments, she was in the depths of despair and knew she would have to start all over again. 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 was fortunate enough to be able to access the drug privately as it was not available on the NHS at that time. The drug has worked so well that scans showed Elen’s cancer has been kicked back into remission and is not growing any further.

She now feels motivated and has a newfound purpose: she wants to start a podcast in Welsh so that cancer patients in Wales can feel like a supported and connected community. Her intention is to create a website to go with it, full of helpful information and links to useful organisations, as well as an online shop selling items she found useful during her cancer journey.

Capivasertib has recently been made available on the NHS, giving many more women like Elen hope. Reflecting on her journey, Elen believes some of the toughest parts are the emotional side effects of dealing with cancer.

She encourages people who are dealing with a cancer diagnosis not to feel alone and to reach out to others for help, whether a listening ear or practical help. “I struggle with my mental health an awful lot because I do feel that we're quite good at looking after the physical side but that we're sadly still lacking a little bit in the emotional side,” Elen adds.

“Don't be afraid of us because we're so scared ourselves that the last thing that we want is for people to be afraid to talk about our disease, to talk about our feelings, to help us to actually do small things. I remember my friends would bring us casseroles and food and cakes and it was lovely. So you don't need to do an awful lot. Just leave it on the doorstep if you don't want to go in.

“Or write us a little card, because everything like that helps: it’s the deep sense of loneliness that actually is the most difficult part.”

Ellen is now doing well and feels hopeful for her future, and while she knows her cancer isn’t curable, it now feels treatable to her “I don't feel bitter about my cancer journey, and I would never ever change my life in any single way,” she adds.

“I have a wonderful husband and children, and I have a really happy life. When my time comes, I certainly don't want people to mourn my passing because my life has been fabulous. It just happens to be one that involves living with cancer.”

To find out more about Elen’s story and the work of The Institute of Cancer Research, visit: icr.ac.uk/BreastCancer