Terminally-ill mum says she will 'die sooner' after clinical trials stopped

A terminally-ill Scottish woman with stage 4 breast cancer, who had to cancel her wedding due to lockdown, believes she will die sooner as a result of clinical trials stopping.

Wednesday, 20th May 2020, 7:30 am
Updated Wednesday, 20th May 2020, 7:45 am

Mother-of-one Karen Hilton, was diagnosed with secondary breast cancer in September 2018 after noticing lumps in her collarbone.

The 48-year-old, who is receiving regular chemotherapy, says medical professionals are now diverting attention away from breast cancer trials to concentrate their efforts on finding a vaccine for Covid-19.

She said: “It just feels like they’re cutting off the stage 4 cancer patient’s lifelines - so, it’s literally life or death.”

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Terminally-ill mum says she will 'die sooner' after clinical trials are halted

Karen, from Dalkeith, has a 13-year-old son, Tristan and was forced to cancel a dream wedding to her partner of 10 years, Alistair with the couple due to tie the knot in Edinburgh last month.

She was given an initial prognosis at the start of the year of 12 months life expectancy but that was changed in March to between 6-12 months.

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Karen, who works as a senior consultant for HSBC, was originally diagnosed with triple negative primary breast cancer with a faulty BRCA1 gene in May 2016, followed by another primary breast cancer in August 2017.

She spoke out as leading UK charity Breast Cancer Now, launch a campaign to help thousands of secondary breast cancer patients experiencing fears and anxiety that their lives could be shortened due to changes to treatment, scans and trials.

Karen, said: “It’s heartbreaking and sanity must prevail in that you can’t just cut off the lifelines of all these hundreds of thousands of patients.

“The NHS are going to end up having an even bigger issue if the trials are sidelined while they deal with Covid - they’re going to have this massive backlog.

“Trials haven’t been happening, they’re not going to be focusing on research and there’s already 450 cancer patients dying every day - but you don’t see those figures published along with the stats for Covid.”

She added: “ At the moment I’m on chemotherapy but because of the nature of my disease which is triple negative and very aggressive there are only so many options that I can get.

“After you’ve exhausted all of the chemotherapies and they’ve stopped working because this type of cancer manages to combat each new treatment my only options left are trials.

“Obviously they’re diverting attention away from breast cancer trials on to Covid and our issue is that it’s just another disease.

“Covid is going to be around for a long time but cancer patients won’t if we don’t get access to these trials.”

Karen says doing nothing was “inconceivable” and is looking to make the best of the time with her partner and son.

She added: “He’s at that difficult age where he’s not really so young that he doesn’t understand but he’s not really old enough to fully comprehend the seriousness of the situation.

“It’s absolutely heartbreaking - we got that diagnosis and thought OK it was very difficult to deal with and just like anything else, you grieve for a few days and then you pull your socks up and get back to positive fighting mode.

“My aim was to make this time enjoyable - myself and my partner have been together 10 years and got engaged recently.

“We actually planned our wedding and a short honeymoon.

“We were originally meant to be getting married on the 4th April at the City Chambers in front of family which is a lovely location - then we were going to go to the Edinburgh Grand on St Andrew Square.

“We had hired a private room to go for a nice family lunch, the staircase there is beautiful - so we would have had lovely photos.”

Karen said she also had a girls weekend booked in Ibiza for a friend’s 50th and was due to be a guest of the Queen at the garden party in Holyrood Palace scheduled for July, but both those events have been cancelled.

Meanwhile, a new survey of over 580 people affected by breast cancer in the UK by Breast Cancer Now found that a significant number of secondary breast cancer patients were seeing their chemotherapy or targeted therapy changed or paused temporarily to boost their immune systems, leading to periods of weeks or potentially months without treatments that had been helping to keep their disease stable.

While many patients reported that their treatment and care had been unaffected, others had seen monitoring scans delayed by up to three months, leaving them uncertain as to whether their current treatment may be working or whether their cancer may be progressing.