Mother's incurable cancer was

A mother-of-two whose terminal blood cancer was “dismissed” as back pain is campaigning to help others be diagnosed more quickly after her own condition was overlooked.

Karen Smith broke her spine in two places and “shrunk” two 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 caused her to have trouble walking and had to sleep propped up in a chair.

She says she has repeatedly visited her GP at Newcastle’s Higherland Surgery in agony, but her symptoms were due to “mechanical back pain” from her work in a pharmacy, Stoke reports on Trent Live.

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Karen, who was an avid weightlifter and gym-goer, was advised to take over-the-counter pain relievers and was referred for physical therapy, which did not improve her condition. Eventually, she was so desperate that she paid for a private appointment with a spine consultant, who ordered X-rays and CT and MRI scans. Two days later, she was diagnosed with myeloma, a cancer that kills 3,000 people in the UK every year.

Now Karen – the mother of Tasmin, 32, and Daniel, 14, is supporting the blood cancer charity Myeloma UK’s campaign to raise awareness of the impact of late diagnosis on patients’ quality of life. Although myeloma is the third most common blood cancer and the 19th most common cancer, it is particularly difficult to detect because symptoms such as pain, easily broken bones, fatigue, and recurring infections are often related to general aging or other medical conditions.

Karen said: “I felt like the pain was getting worse and I didn’t seem to be standing as upright as I used to. I’ve been back and forth to the GP; over-the-counter painkillers made no difference. I was 5ft 5in and I’m 5ft now but no one noticed.

“I was referred to a physical therapist as my GP initially suspected mechanical back pain related to my pharmacy work, but physical therapy made the problem worse. I had uncontrollable cramps and couldn’t go to bed. I slept best propped up in a chair I could try to get a few hours of sleep.

“I just knew something was wrong and it got worse. The pain came randomly and took my breath away. It was like someone was pulling a rope around my ribs and sticking needles in me at the same time.”

Despite the pain, Karen says her GP office did not send her for an X-ray and was advised to continue taking painkillers. At the time of diagnosis, she was found to have two fractured vertebrae and a compressed disc, and had to wear a back brace and walker for four months.

Karen, who has since moved to another GP practice, added: “I was not at all happy with my GP and felt like I was being fired. I asked for help and got nowhere. How many times does one have to back up before a red flag is raised? I had fallen from a great height onto concrete – but actually that fall at work saved my life.

“The spine consultant couldn’t believe I could stand. I was admitted to Royal Stoke University Hospital for eight days, had a spate 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 small goals, like just reaching the bottom of the stairs. It took me two months to walk up the stairs by myself because I was so afraid of falling.”

After six cycles of chemotherapy, Karen — who received a stem cell transplant in March 2021 — was able to walk and drive steadily again. Life had more or less returned to normal when late last year she felt a sharp pain over lunch and heard a loud pop in the left side of her jaw.

Tests revealed her cancer had returned and her jaw was fractured, and she underwent five sessions of radiation therapy in January this year. She is currently undergoing new private treatment twice a week at Nuffield Hospitals in Newcastle and Wolverhampton to help fight myeloma.

Treatment aims to control the disease, reduce the complications and symptoms it causes, increase the patient’s 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, most of them aged 65 and over. Half of all myeloma patients survive their disease for five years or more, while about a third survive ten 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 diagnoses.

The grandmother-of-two said: “I had never heard of myeloma and came back with a lot of information when I was diagnosed. It’s incurable but treatable – and I’ve responded well to treatment and fortunately feel pretty good about myself.

“I was angry when I was first diagnosed but I’ve spoken to myself and I haven’t had many bad days. I didn’t cry much even when I was diagnosed.

“I’m living my normal life now, just a little slower. You can’t be the same person you were, but you just have to adapt and change the way you think. Life is good.

“I want people to know about myeloma and recognize the signs. If anything doesn’t feel right, please have it checked. We need more funding and awareness because it feels like myeloma is a forgotten cancer.”

Patients are experiencing significant delays in getting diagnosed, with 50% waiting more than five months, according to Myeloma UK’s report, A Life Worth Living, out today. About a third of multiple myeloma patients visit their primary care physician at least three times before receiving a diagnosis, and 31% receive the diagnosis through an emergency route.

Shelagh McKinlay, Acting Director of Research and Patient Advocacy for Myeloma UK, said: “We cannot allow the lives of patients like Karen to be disrupted by avoidable delays in diagnosis. The quality of life for people with myeloma has never been more important than it is today. Advances in treatment mean patients can now live longer than ever before.”

Higherland Surgery said it “cannot comment on individual cases”. But it added: “We believe the surgery in this case made the appropriate referral to a specialist service. We have not received any complaint from the patient.”

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