‘Magic German Treatment Saved My Life’ But The NHS Doesn’t Offer It

A father-of-three, diagnosed with a terminal brain tumour when he was just 33, has defied the odds to beat his initial prognosis and is calling for improved brain cancer treatments.

Mark Thompson was living a normal life in Littlehampton, West Sussex, when suddenly he was dogged by dizziness, headaches and vision problems. A scan and further tests revealed he had an anaplastic astrocytoma. After an awake craniotomy to remove the mass, he was offered the NHS standard of care; radiotherapy and chemotherapy and given an estimated three to five years to live.

However, Mark sought a second opinion and privately funded pioneering immunotherapy treatment in Germany at a cost of more than £100,000. Mark’s friends and family rallied around him to raise the money, with football tournaments, disco nights and group hikes, including Snowdon, as Mark grew up in New Quay, Wales.

He said: “The treatment worked like magic, and with almost no side effects. I’m now coming up to five years, and latest scans show no evidence of the disease at all. I’m stable, that’s more than I ever hoped for.”

Mark has been advised to continue with a decreased dose of the treatment indefinitely, in the hope of preventing the tumour returning. However all the money raised for his treatment has been used, so the family is fundraising once more.

Mark, husband to Sofia and father to Wilson, 17, Rihanna, 11, Charlie, eight, started getting symptoms in February 2018. It took six months of medical appointments before a CT scan was offered at Worthing Hospital, which revealed the mass.

Mark, who works in horticulture, growing bedding plants, said: “They told me immediately I had a brain tumour, there wasn’t any messing about.

“I had an operation to remove the tumour, but they couldn’t get to all the surrounding cancer cells. It was really weird to be awake with people rummaging around inside my head, but it was the best way to make sure they didn’t remove or damage any healthy tissue.

“I was then told the tumour was terminal and I had between three and five years to live. It wasn’t the best to find that out at 33. The first thing that came into my mind was my kids, it was really difficult to deal with. My youngest, Charlie, had only just turned three. I remember Sofia turning to me and saying: ‘I don’t think I can do this without you’, and I knew I had to fight it.”

Mark, now 38, was four months into a 12-month course of chemotherapy when family friend Pip Emmott helped him to get a second opinion, having previously lost her sister to the disease. Mark spoke to Professor Dalgleish at St George’s Hospital, at which point he said “everything changed”.

Prof Dalgleish recommended immunotherapy under Dr Thomas Nesselhut in Duderstadt, and prescribed Mark other repurposed drugs, as well as cannabis oil at a cost of £420, which Mark had to pay for.

Mark’s first treatment cost nearly £12,000, which involved taking his blood, removing white blood cells, multiplying them, freezing them and then using those for future injections. He then needed monthly doses, at about £7,000 a time, but these have now been reduced to every six to eight months, which he hopes to maintain.

Mark said: “Everything feels a lot more positive now and I’m pretty much back to normal, other than my eyesight isn’t great thanks to damage from the initial radiotherapy.”

Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

Mark added: “I have no doubt going to Germany saved my life. But it was horrendous, really, with the money and the time away from family. My oncologist in Sussex wasn’t happy about me having any alternative treatments, but I had to do what’s right for me. I just don’t think the NHS looks at any other possible treatment, it’s chemo and radio and that’s it. I’m not against the NHS at all, but what I have found incredibly frustrating in this whole journey is how limited treatments are in this country. Treatments for brain tumours haven’t improved in decades, and it needs to change.”

Mark is now campaigning alongside the charity Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, in the hope of prompting a parliamentary debate.

The charity is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.

Brain Tumour Research wants the Government to recognise brain tumour research as a critical priority. It says the increase in research investment would put brain tumours in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.

Hugh Adams, head of stakeholder relations for Brain Tumour Research said: “It’s fantastic to hear that Mark is doing so well after such a stark, and no doubt terrifying, diagnosis. More must be done to develop treatments in this country for patients like Mark, so they are not forced into having to travel abroad for care.

“For too long governments have put brain tumours on the ‘too difficult to think about’ pile. Five years after the Government announced £40 million for brain cancer research, just £15 million has been spent. Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.

“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”

To sign and share the petition before it closes at the end of October 2023, go to www.braintumourresearch.org/petition

To support Mark’s fundraising, visit: www.gofundme.com/f/treatment-for-brain-tumour

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.