A mum-of-two's incurable blood cancer was 'dismissed' as back pain by medics which left her unable to walk and having to sleep in a chair. She is now campaigning to ensure others are diagnosed with the condition more quickly.
Karen Smith's troubles started when she broke her spine in two places and 'shrank' five inches before being diagnosed with myeloma. The 55-year-old, who lives in Newcastle, Staffordshire, was finally diagnosed in January 2020, two months after the fall, reports Stoke on Trent Live.
She says she repeatedly visited her GP at Newcastle's Higherland Surgery in agony but her symptoms were thought to be down to 'mechanical back pain' due to her job in a pharmacy. Keen gym-goer Karen was advised to take over-the-counter painkillers and referred for physiotherapy.
Eventually she paid for a private appointment with a spinal consultant, who ordered X-rays as well as CT and MRI scans. Two days later, she was diagnosed with myeloma, a cancer which kills 3,000 people each year in the UK.
Now Karen is backing blood cancer charity Myeloma UK's campaign to raise awareness of the impact of delayed diagnosis on patients' quality of life. Despite being the third most common type of blood cancer and the 19th most common type of cancer, myeloma is especially difficult with symptoms often linked to general ageing or other conditions.
She said: “I felt I was getting worse with the pain and didn’t seem to be standing as upright as normal. I was back and forth to the GP; over-the-counter painkillers weren’t making any difference. I was 5ft 5in and I’m now 5ft but no-one noticed.
“I was referred to a physiotherapist as initially my GP suspected mechanical back pain associated with my pharmacy job, but physiotherapy exacerbated the problem. I had uncontrollable spasms and couldn’t lie down in bed. I was sleeping propped up in a chair as best I could manage to try to grasp a few hours of sleep.
"I just knew that something wasn't right and it was getting worse. The pain would come on randomly and take my breath away. It was like someone tightening a rope around my ribs and sticking pins in me at the same time."
Despite the excruciating pain, Karen says she was not sent for an X-ray by her GP and was advised to continue with the painkillers. When she was eventually diagnosed, Karen was found to have two broken vertebrae and a compressed disc, and was forced to wear a back brace for four months and relied on a walker.
She added: “The spinal consultant couldn't believe I was able to stand. I was admitted to the Royal Stoke University Hospital for eight days, had a plethora of tests, and two days later I started treatment. I was determined to walk again and I set little targets for myself."
After six cycles of chemotherapy, Karen - who received a stem cell transplant in March 2021 - steadily started to walk and drive again. However, she received a devastating setback at the end of last year, she felt a sharp pain and heard a loud cracking sound on the left side of her jaw while having lunch.
Tests revealed that her cancer had returned causing her jaw to fracture, and she underwent five sessions of radiotherapy in January this year. She is currently undergoing a new private treatment to target the myeloma twice a week at the Nuffield hospitals in Newcastle and Wolverhampton.
Myeloma currently affects more than 24,000 people in the UK, mostly aged 65 and over. Half of all myeloma patients will survive their disease for five years or more, while around one third will survive for 10 years or more.
The grandmother-of-two said: "I had never heard of myeloma and came back with lots of information when I was diagnosed. It is incurable but it is treatable - and I have responded well to treatment. I was angry when I was first diagnosed.
"I'm living my normal life now, just at a slightly slower pace. You can’t be the same person that you were, but you just have to adapt and change your mindset. I want people to know about myeloma and spot the signs."
Myeloma UK acting director of Research and Patient Advocacy, Shelagh McKinlay, said: "We cannot allow the lives of patients like Karen to be diminished by avoidable delays in diagnosis. The quality of life of people living with myeloma has never been more important, with advances in treatment meaning that patients are now able to live longer than ever before."
MYELOMA SYMPTOMS
- Persistent or unexplained pain for more than four to six weeks, particularly in the back or ribs
- Spontaneous fractures
- Hypercalcaemia (high calcium levels in the blood)
- Reduction in kidney function
- Recurrent or persistent infections
- Unexplained anaemia
- Nosebleeds or unexplained bleeding
- Unexplained breathlessness
- Feeling generally unwell – fatigue, weight loss, suspicion of underlying cancer
- Unexplained peripheral neuropathy, that is damage to the nerves that make up the peripheral nervous system. In myeloma the nerves that are most commonly affected are those of the hands and feet
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