Hannah and Neil Pearce were diagnosed with myeloma three years apart. They had both been misdiagnosed initially.
Despite experiencing nagging backache and fatigue for six months, Neil’s cancer was misdiagnosed first as polymyalgia (muscle stiffness) and then as rheumatoid arthritis.
By the time his myeloma was caught, in 2017, the grandfather-of-eight from Looe had lesions in his lower back.
His daughter Hannah, from Liskeard, was diagnosed in 2020, after her cancer was initially misdiagnosed as costochondritis, an inflammation of the cartilage that connects a rib to the breastbone.
She was just 46 years old.
“We all know our bodies and it is vital to follow your instincts,” said Hannah. “If you feel there is something wrong, please get it checked. I had to keep questioning for my diagnosis and thank goodness I didn’t take no for an answer.”
While Hannah has responded well to treatment, Neil’s cancer has unfortunately returned three times over the past five years.
The 77-year-old is currently on his last round of available chemotherapy, after which he will have exhausted all treatment avenues.
Hannah, a mother-of-one, added: “We both had to wait to get a diagnosis and you can’t help but wonder ‘What if?’. What if we had both had an earlier diagnosis, would it have changed the outcome or the amount of years we will have with our families?”
“I started getting pain and discomfort in my sternum in October 2019, but I wasn’t diagnosed until October 2020 — after several calls to the doctor, a chest X-ray which we now know was unfortunately misread, and even being told by a GP I was not in enough pain for it to be anything serious.
“If I think back, the pain came and went but there were times when I couldn’t go to bed, I had to sleep upright in a chair. On occasions it was too painful to even hug my daughter Tegen.”
Despite being the third most common type of blood cancer, myeloma is frequently missed, as its symptoms, including back pain, easily broken bones, fatigue and recurring infection, are vague and often linked to general ageing or minor conditions.
Half of patients wait more than five months to be diagnosed.
While one in four patients wait more than 10 months for a diagnosis. These are some of the longest delays out of any cancer in the UK.
Yet, a simple blood test can, in most cases, pick up signs of myeloma.
Myeloma UK chief executive Dr Sophie Castell said: “The most important thing people can do is rule themselves out by checking their symptoms and, if anything isn’t right, go see their GP.
“The symptoms of myeloma are vague and can often seem unrelated or appear at different times, so if you think there’s more to it than run-of-the-mill tiredness, a pulled muscle or old age – and if your symptoms just aren’t going away – please keep pushing or ask for a second opinion. It might take more than one appointment for your doctor to put the pieces of the puzzle together.”
Myeloma is a rare incurable blood cancer which occurs in the bone marrow and currently affects more than 24,000 people in the UK. 3,000 people die from myeloma in the country each year.
34% of myeloma patients visit their GP at least three times before getting a diagnosis.
31% are diagnosed through A&E.
While it is incurable, myeloma is treatable in the majority of cases. Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving patients’ quality of life.
However, delays in diagnosis have been shown to have a huge impact on quality of life.
50% of all myeloma patients receive a delayed diagnosis while 34% of patients with a delayed diagnosis are left with broken spines.
During the pandemic, myeloma saw a drop in diagnoses, with confirmed cases down by 851 compared to pre-COVID expectations.
Dr Castell said: “We know that during the pandemic fewer people were diagnosed with myeloma than expected. This means that around 851 people could be unaware that they are living with blood cancer today.
“Diagnosing myeloma early is vital. Yet we know that half of all myeloma patients are diagnosed far too late, by which point many of them have broken bones or spines, irreversible kidney damage and other avoidable complications. Their potential to live well is severely restricted, no matter what treatments they end up receiving.”
For more information about myeloma go to www.myeloma.org.uk
Myeloma UK also runs an Infoline on 0800 980 3332.