A mum-of-two whose incurable blood cancer was "dismissed" as back pain is campaigning to ensure others are diagnosed more quickly, after her own condition was missed.
Karen Smith broke her spine in two places and "shrank" five inches before being diagnosed with myeloma. The 55-year-old, who lives in Newcastle-under-Lyme, Staffordshire, was finally diagnosed in January 2020, two months after a fall at work left her struggling to walk and having to sleep propped up in a chair.
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, reports Stoke on Trent Live.
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Karen, who was a keen weightlifter and gym-goer, was advised to take over-the-counter painkillers and referred for physiotherapy, which failed to improve her condition. Eventually she became so desperate that 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 - who is mum to Tasmin, aged 32, and Daniel, aged 14 - 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 to detect as symptoms, such as pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or other conditions.
Karen 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 pain Karen says she was not sent for an X-ray by her GP surgery and was advised to keep taking painkillers. By the time she was diagnosed she 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.
Karen, who has since moved to a different GP practice, added: "I wasn't happy with my GP at all and I felt like I was being dismissed. I was asking for help and getting nowhere. How many times do you have to go back before it raises a red flag? I had fallen from height onto concrete - but in fact that fall at work saved my life.
“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 discharged home in a wheelchair and wore a back brace for four months. I was determined to walk again and I set little targets for myself, like just getting to the bottom of the stairs. It took me two months to be able to walk upstairs on my own because I was so worried about falling down."
After six cycles of chemotherapy, Karen - who received a stem cell transplant in March 2021 - steadily started to walk and drive again. Life had more or less returned to normal when, 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.
The treatment aims to control the disease, relieve the complications and symptoms it causes, increase patients’ life expectancy and improve their quality of life. It generally leads to periods of remission, but patients inevitably relapse requiring further treatment.
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.
Karen prefers not to dwell on the past or speculate on the future, and hopes that sharing her story will help others avoid unnecessary pain and delayed diagnosis.
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 and thankfully feel quite well in myself.
"I was angry when I was first diagnosed but I gave myself a talking to and I haven't had many down days. I haven't cried much, even when I was 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. Life is good.
"I want people to know about myeloma and spot the signs. If anything doesn't feel right, please get it checked. We need more funding and awareness because it feels like myeloma is a forgotten cancer.”
According to Myeloma UK’s report, A Life Worth Living, which is released today, patients experience significant delays in getting diagnosed, with 50% waiting more than five months. Around a third of myeloma patients visit their GP at least three times before getting a diagnosis and 31% are diagnosed via an emergency route.
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."
Higherland Surgery said it "cannot comment on individual cases." But it added: "We believe the surgery made the appropriate referral to a specialist service in this instance. We have not received a complaint from the patient."
