Yorkshire man’s blood cancer missed for over six months despite golf ball-sized lumps on head

A Ripon man whose incurable blood cancer was missed for more than six months despite having lumps the size of golf and cricket balls on his head has vowed to ensure others don’t ever have to endure what he did.

Carl Tonks, 49, saw four separate GPs but each of them assured him the five large growths on his head were just benign cysts.

The lumps couldn’t be removed on the NHS as it doesn’t cover cosmetic surgery.

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Mr Tonks eventually changed practices and booked a private appointment with a cosmetic surgeon who confirmed his worst fears - the lumps were in fact plasmacytomas, a rare complication of the blood cancer myeloma.

The lumps on Carl Tonk's head were so large he couldn't hide them under a hat

“Within 45 seconds the consultant realised they weren’t cysts and that there was something seriously wrong,” said Carl.

“He was so concerned he did a blood test immediately. I was diagnosed with myeloma six days later.”

Carl, who works as the head groundsman at Ripon Racecourse, said that he noticed “one or two” lumps on his head in August 2014 and he also had a stiff neck.

“As time went on, they started getting larger. I had five lumps in total. By December one of them was the size of a cricket ball and two were the size of golf balls. But they kept saying they were cysts and that the neck issue was probably age,” he said.

Carl Tonks with his wife Angie

By February 2015, the lumps had grown so large not even a hat could hide them, and Carl was gripped by nausea and bedridden due to pain for days.

At this point he was prescribed diazepam and spiralled into depression.

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“I never cared about my appearance but my head was not normally shaped and it started to bother me: I was embarrassed at my appearance," he said.

“The status of limbo had a major impact on my mental health. By the end of March, I was very lethargic and low. I was really struggling with the physical side of my job.”

“Until I saw a specialist, I had never had a blood test or any major physical examinations, but a simple blood test would have shown something wasn’t right,” added Carl,

“I saw four GPs and not one of them picked up on anything or questioned it. Of all the things on this whole journey, that’s the thing that got to me: that there was no blood test.

By the time he was diagnosed at the age of 42, Carl had suffered severe kidney damage. To this day his kidneys “are about 30% efficient.”

Scans also revealed further growths on his spine, shoulder blades and sternum.

Following rounds of chemotherapy, Carl received a stem cell transplant in November 2015. He’s been in remission ever since - but says life will never be the same again.

Carl is now backing blood cancer charity Myeloma UK’s campaign to raise awareness of the hidden impact of delayed diagnosis on patients’ quality of life.

He is also supporting the charity’s calls to make sure quality of life is included as a key part of the government’s ten-year cancer strategy.

Despite being the third most common type of blood cancer, myeloma is especially difficult to diagnose as symptoms, chief among them pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions.

Patients experience significant delays in getting diagnosed, with 50 per cent waiting over five months, according to a new ‘A Life Worth Living’ report by charity Myeloma UK.

Furthermore, 34 per cent of myeloma patients were found to visit their GP at least three times before getting a diagnosis, and 31 per cent are diagnosed via an emergency route.

Myeloma UK Acting Director of Research and Patient Advocacy, Shelagh McKinlay, said: “Whether through severe and chronic pain, spinal fractures, kidney damage and other complications, myeloma patients are being condemned to a life of limitations and pain because they were diagnosed far too late.

“From the very start, their potential to live well is severely restricted, no matter what treatments they end up receiving – the damage is irreversible.”