I’ve spent £30k on cancer treatment not available on the NHS
AWOMAN who was told there was “nothing at all” that could be done for her following her cancer diagnosis has said she has spent around £30,000 on treatment and care outside the NHS.
Catherine ‘Cat’ Mackay, aged 62, from Llanddewi Ystradenny, Powys, was diagnosed with metastasized bowel cancer in September 2020.
After being told she would have 18 months to two years to live, Cat and her husband, Darren, sought alternative treatments, including treatment outside the UK.
With the aid of friends, family and others who wanted to support Cat through fundraising, she was able to travel to Frankfurt, in Germany, where she said she received cancer treatment at a leading research professor’s clinic.
According to Cat, she has had to “fight for [her] life”.
Although the treatment she has received in Germany is working, with all her money and funds raised going towards treatment overseas, Cat said she feels she is currently “firefighting” against the illness as the treatment is not available in Wales or elsewhere in the UK.
At the end of January, a report found that cancer waiting times in Wales were the worst they have ever been, with only 54% of patients starting their first treatment within 62 days in November 2022.
The Welsh Government said there is an urgent need to improve cancer services in Wales, with NHS Wales publishing a three-year improvement plan aimed at improving cancer patient outcomes and reducing health inequalities.
While survival has significantly improved for patients with many cancer types, outcomes for other “less survivable cancers” have improved slowly.
Suspected cancer referrals, demand for diagnostic tests and some treatments such as immunotherapy were rapidly increasing prior to the coronavirus pandemic, the report said. But with the capacity of the healthcare systems struggling to cope with this demand, it had “undoubtedly been exacerbated”.
Cat was diagnosed with bowel cancer, which metastasized to the lungs and liver, in September 2020.
“Initially, I was told they could do nothing at all,” she said.
“It was a bit of a shock to me and my husband. But being the person that I am – being told that I had 18 months to two years to live, I sought out another consultant at another hospital.
“With the aid of friends and strangers, we raised the money to get an additional drug chemotherapy called Avastin, which is not available for bowel cancer patients on the NHS.
“I was on Avastin for over a year and it did stabilise the tumour. Then out of the blue, in September of last year, I was told that it wasn’t working anymore and that was it.”
Cat and her husband then decided to look for alternative treatment outside the UK.
They found a leading research expert, Professor Thomas Vogl, at Frankfurt University Hospital, who was able to offer a cancer treatment called trans-arterial chemoembolisation.
Trans-arterial chemoembolisation, or TACE, places chemotherapy and synthetic materials called embolic agents into a blood vessel feeding a cancerous tumour to cut off the tumour’s blood supply and trap the chemotherapy within the tumour.
It is most often used to treat liver cancer, but may also be used in patients whose cancer has spread to other areas of the body.
Here in the UK, however, chemoembolisation is only used to treat tumours in the liver.
With money from the fundraising and from her savings, Cat decided to travel to Germany for the treatment in October of last year.
She said there was a “phenomenal difference” between the care and treatment she received in Germany and what she had received back home.
Cat said: “We rang Professor Vogl’s secretary, he rang me the same day.
“He was a lovely chap and offered me an appointment immediately. We still had money in the funds at this point, and we went over.
“He sat me down, he told me more about my cancer than I had known since I had been diagnosed – no-one had explained anything to me. He did an MRI and a scan, sat me down and showed me everything.
“He showed me where he was going to treat first, you’re awake for the whole procedure – you watch it all, you have another scan afterwards to check everything, and then you go back in and see what has been done.
“He said that he could potentially extend my life with quality significantly.
“There was a phenomenal difference between what I received here in the UK and what I got in Germany.
“I was blown away by the treatment I got over there. The process that I was going through, as a patient overseas for this, was straightforward. The attitude of staff, the speed, the communication process they have over there is symbiotic.”
While also receiving treatment at the Velindre Cancer Centre in Cardiff, Cat has sought treatment in Frankfurt five times now.
And although she feels “absolutely amazing” about the positive progress she has made under ProfVogl’s care, she said she is concerned about her future.
“It feels like I am firefighting because I’m here in the UK,” she said.
“I need that treatment and support here, but I can’t get it. Sometimes when I go to chemotherapy I look around the wards and see people are already giving up before they have started the fight. I say to myself, ‘some of these people could be helped.’
“I am one of so many people in this position and I don’t feel like it’s highlighted enough. There are thousands of people out there that shouldn’t be dying or should have their life prolonged, and I’m one of them. I’m 62 and I want to live. I’m not ready to go and I’m fighting for my life in what should be one of the richest countries in the world.”
Cat is now looking to raise money for her sixth treatment of trans-arterial chemoembolisation in Germany. Her former colleagues are walking the Cambrian Way from Cardiff to
Conwy over the next 27 weekends in an attempt to raise money and support her.
So far, Cat has spent £29,420 on cancer treatment outside the NHS. The Avastin drug amounted to £9,420 for 12 months, while the five trips to Germany, including travel, accommodation and treatment, have come to a total of £20,000.
Cat says she has been overwhelmed by the amount of support she has received since her initial diagnosis.
“I’ve cried over my friends’ and strangers’ generosity and donations,” she said. “My husband has been amazing, he’s the best thing that has ever happened to me. He refuses to accept that I’m dying, I know it’s going to happen but I’m not going to give in.
“I would love to renew my wedding vows with my wonderful hubby and to continue to fight this, to help highlight the state of our cancer services here in Wales and to make an impact that will help improve the lives of others suffering. Cancer is devastating enough without having to fight all the way.”
A Welsh Government spokesman said: “We are unable to comment on individual cases. We expect the NHS in Wales to deliver evidence-based treatments that have been recommended by professional bodies following an assessment of their clinical and cost effectiveness.
“This ensures NHS funding is used in a way that achieves the greatest possible health gain for the people of Wales.
“We are investing heavily in cancer services to improve early detection and provide rapid access to investigation, treatment and high-quality care.”