In 2019, Steve’s life was upended when he began experiencing a troubling symptom: numbness in his left leg. As he’d been dealing with persistent back issues, it was natural for him to assume they were related. What he did not think for a moment might be in any way related to the leg numbness were his stomach problems.
For years, he’d been told he had stomach ulcers or irritable bowel syndrome, but these explanations never seemed quite right. He hadn’t been in pain – something that puzzled both him and the doctors, who would in turn blame stress or the food he ate. But everything changed when, during a routine GP examination, a lump was discovered in his abdomen. Steve hadn’t noticed it himself.
“It was strange,” he recalls. “No pain, nothing. I only found out because the GP happened to press on that area.”
After several months of referrals, scans, and consultations, Steve was diagnosed with a tumour in his abdomen, a liposarcoma, a rare type of cancer that develops in fatty tissue. The tumour was enormous, measuring 38 centimetres in length, and it was affecting his urinary function because it was pushing on his bladder. There was no pain, but it was pressing on his internal organs and needed to be removed.
On Valentine’s Day 2020, Steve underwent major surgery to remove the tumour. Alongside it, surgeons removed his left kidney, spleen and part of his large bowel. The recovery was difficult but ultimately successful, and for a year, there were no signs of recurrence. Life slowly returned to normal. However, almost exactly a year later, there was a recurrence of the tumour in the abdomen, and he had another successful surgery to remove it. After that, he remained well and under regular checks.
That, however, changed in May 2024. A routine scan revealed a new mass, 13 by 10 centimetres in size, and growing rapidly. A new surgery was scheduled – but it was fixed to other organs and blood vessels in the abdomen which made removal impossible. It was devastating news for Steve and his wife.
Proton Beam Therapy
“We went from a place of calm to complete despair,” Steve says. “We were told it couldn’t be operated on. That hit us hard. But then from that darkness, we saw Dr. Seddon, and she mentioned proton beam therapy. Amazing. And that was the first time we heard about proton beam therapy.”
Proton Beam Therapy is an extremely targeted form of radiotherapy which, as the name suggests, uses protons rather than the more commonly used photon radiotherapy. It delivers a beam of protons to disrupt and destroy tumour cells while reducing the dose to the healthy surrounding tissue and nearby organs. This in turn leads to fewer side effects, allowing for more treatment to be safely directed to the tumour. This was particularly important for Steve, as his single remaining kidney was directly next to the tumour, and it was essential to protect it and preserve his kidney function.
Once Steve understood how precise proton beam therapy was, he knew he had to give it a try. Steve underwent 28 sessions of proton therapy on August 2024, at the UK’s only private proton beam therapy centre, Proton International London, located in University College London Hospital (UCLH) under the care of Dr Beatrice Seddon, Consultant Clinical Oncologist. As one of the few UK centres equipped with proton beam therapy facilities, the treatment centre became a pivotal part of Steve’s care journey. The treatment, administered as an outpatient, brought with it not just physical demands, but emotional ones too.
“You’d sit there in the waiting area, and there’d be these tiny kids also waiting for their treatment. That really got to me,” he said. “It’s absolutely heart-breaking.”
Despite the emotional toll, Steve remained resilient. “The actual treatment wasn’t as bad as I’d feared. I got tired, sure, but nothing like what I imagined. People still think cancer treatment means being sick every day, but it’s changed. And the people at UCLH and Proton International London were incredible.”
After the treatment, Steve received the news he and his wife had been hoping for: the tumour had significantly reduced in size. The relief was enormous. “Dr. Seddon was always careful with words, and when she said there had been a ‘significant’ reduction… significant, she said. I could have got up, gone around the table and hugged her!”
Seeking a Second Opinion
Looking back, Steve says that the biggest lesson is that the path to diagnosis and treatment was not always straightforward.
“There were definitely moments where I felt things were a bit disjointed,” he says. “I saw so many different people, and because of that, some things didn’t get communicated clearly. For a while, no one actually told me it was cancer – I just knew there was ‘a mass.’ I think everyone assumed someone else had already said it.”
He also recalls being referred to a specialist who turned out not to be the right fit. “I was sent to someone who only dealt with sarcomas in limbs. I remember sitting there thinking, ‘But my tumour’s in my abdomen.’ He was perfectly nice, but he agreed – he said I shouldn’t be seeing him and referred me elsewhere.”
These experiences have left Steve with a strong belief in the value of seeking second opinions, particularly when things feel uncertain. “You do need to push a bit, ask questions. I don’t mean being difficult, but just being involved. If you feel something’s not quite right, it’s OK to say so.
“I was lucky to already be under Dr Seddon’s care,” he explains. “She’d been working alongside my surgeon since 2020, so when things changed and surgery wasn’t an option anymore, she was already there and able to act quickly.”
Steve believes more could be done to raise awareness of treatments like proton beam therapy, particularly for those with rarer cancers. “I don’t think many people even know it exists,” he says. “And unless you’re already in the right part of the system, you might never hear about it. That’s why I think talking about these things matters – so others can ask the right questions if they need to.
“I think the NHS does an incredible job, but it’s a big system, and sometimes you can feel a bit lost in it. Having a specialist who knows your case and follows it over time – that made all the difference for me.”
Digging Deeper
Through it all, Steve has become an advocate – not just for himself, but for others in his same situation. He encourages patients not to accept information at face value.
“Ask questions. Look things up. If one person says no, ask someone else. You’ve got to be your own advocate,” he says. “There’s somebody out there that will help you. You just need to be patient and find them. When you come across something for the first time, you start seeing it more. You start hearing about it more. This is how it is for proton beam therapy. It’s just a matter of helping people find it. And then they need to have the bravery to step away from what they’re being told by their doctor or their clinician and make an inquiry.”
And, Steve adds, you need to be positive – even though, going by his experience, it can be very difficult not to give in to despair.
“One of my very good friends who had throat cancer says that you’ve got to be positive,” he says. “If you’re not positive, if you’re always worrying and negative, then eventually you’ll be right. But if you’re always positive, if you’re positive, it helps everything. If you stay positive, you have a chance. But if you just worry about stuff and you’re negative, then it will be a self-fulfilling prophecy.”
A Consultant’s Perspective
“Steve’s tumour was in a very challenging location,” says Dr. Beatrice Seddon, Consultant Clinical Oncologist at Proton International London. “It was large, and fixed to other organs, including his only remaining kidney. Proton beam therapy allowed us to deliver an effective dose to the tumour while sparing as much healthy tissue as possible, which was not feasible with standard photon radiotherapy. His determination to stay positive and engaged in his care made a real difference to how he navigated a complex and demanding treatment.”
