|
Hello,
As Blood Cancer Awareness Month gets underway (today), blood cancer patients are encouraging the public to trust their instincts and get themselves checked before it’s too late.
Half of people with the incurable blood cancer myeloma wait over five months to get diagnosed.
1 in 4 patients wait over 10 months. These are some of the longest delays out of any cancer in the UK.
I’ve included two case studies, both available for interview:
Sarah Myers, 42, from Bedford.
- She had to wait a year for a diagnosis after initially being misdiagnosed with asthma.
- By the time her cancer was caught she had lost 8cm in height and had holes in the bones of her legs, sternum and pelvis.
Father and daughter Hannah and Neil Pearce, from Cornwall.
- They were diagnosed with the incurable blood cancer myeloma three years apart. They’d had both been misdiagnosed initially.
- By the time Neil’s cancer was caught, in 2017, the grandfather-of-eight from Looe had lesions, or holes, in his lower back.
Photos of Sarah Myers: https://myeloma31-my.sharepoint.com/:f:/g/personal/marion_sauvebois_myeloma_org_uk/EpA_vcG1LBROmOSQrZ7Z-h4BiXerAc4L-E1dXwXaCPL9FQ?e=qbCftf
Photos of Hannah and Neil Pearce: https://myeloma31-my.sharepoint.com/:f:/g/personal/marion_sauvebois_myeloma_org_uk/EpIV52C9D7tFuvq2lHzuJsgBB6iuRmzryb0cXud0qhYLtQ?e=iK5kBR
Photo of Myeloma UK CEO Dr Sophie Castell here: https://myeloma31-my.sharepoint.com/:f:/g/personal/marion_sauvebois_myeloma_org_uk/EitzoU9vtQFAoVqfFYrGDvEBPqoR1QB3AX1kTL2VOO517g?e=pT8Xdf
“TRUST YOUR INSTINCTS” URGES CHARITY AS HALF OF CANCER PATIENTS DIAGNOSED LATE
This Blood Cancer Awareness Month, blood cancer charity Myeloma UK is urging people to trust their instincts and get themselves checked if something doesn’t feel right.
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 over five months to be diagnosed.
While 1 in 4 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.
Sarah Myers, from Bedford, was diagnosed in 2018, over a year after she first started getting symptoms. She was just 37.
By the time her cancer was caught, several of her vertebrae had collapsed, causing her to lose 8cm in height. She had holes in the bones of her legs, sternum and pelvis.
The 42-year-old HR consultant is now on a mission to raise awareness of the tell-tale signs of this hidden blood cancer and of the severe impact of delayed diagnosis on people’s quality of life.
“You know your own body and when things aren’t right with it,” said Sarah, who was initially told her symptoms, including repeated infections and shortness of breath, were caused by asthma. “If you feel something isn’t right – an infection isn’t getting better, or the pain has been hanging around for too long – you really need to push for a second opinion or to see a specialist. Keep pressing if you’re not happy with the answers you’ve been given. Be really dogged about getting that diagnosis.”
Sarah is now on her third line of treatment and has had to have an operation to stabilise her femur, owing to bone damage caused by myeloma.
She added: “When I was diagnosed and they measured me, I remember thinking, ‘That’s not my height’. I was 5ft 8in previously and I’m noticeably shorter now. I try to be stoic about my illness but some days it’s really tough. I went undiagnosed for a long time. If it had been diagnosed sooner, perhaps the damage to my bones wouldn’t have been so significant.”
Father and daughter Hannah and Neil Pearce, from Cornwall, were diagnosed with myeloma three years apart. They’d had both been misdiagnosed initially.
Despite suffering from 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.”
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 runs an Infoline on 0800 980 3332.
WHAT IS MYELOMA?
- Myeloma is an incurable blood cancer that occurs in the bone marrow and currently affects more than 24,000 people in the UK
- On average 16 people are diagnosed with myeloma every day in the UK
- Despite being the third most common type of blood cancer, myeloma is especially difficult to detect as symptoms, chief among them pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions
- While it is incurable, myeloma is treatable in the majority of cases
- 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 is the 19th most common type of cancer
- Myeloma mostly affects people aged 65 and over but it has been diagnosed in people as young as 20
10 KEY STATISTICS
- Around 5,900 people are diagnosed with myeloma every year
- Eight people die from myeloma every day
- More than 3,000 people die from myeloma every year
- 74% of people diagnosed with myeloma every year are over 65
- Half of all myeloma patients will survive their disease for five years or more
- Around one third of myeloma patients will survive their disease for ten years or more
- Half of patients face a wait of over five months to receive the right diagnosis and around a third are diagnosed through an emergency route
- A third of myeloma patients visit their GP at least three times before getting a diagnosis
- Myeloma is the third most common type of blood cancer
- Myeloma makes up 2% of all new cancer cases diagnosed ever year
ABOUT MYELOMA UK
- Myeloma UK is the only organisation in the UK exclusively dedicated to myeloma and related conditions
- We receive no core Government funding and rely almost entirely on voluntary donations and fundraising
- Our ultimate goal is to find a cure and make myeloma history. Until then, our mission is to help every patient live well with myeloma for as long as possible
- We are committed to diagnosing myeloma earlier, discovering and sharing knowledge, transforming the patient experience and influencing positive change in care
- We provide a range of crucial information and support services for patients, their family and friends
- Our free Myeloma Infoline is available on 0800 980 3332, Monday-Friday 9am-5pm (closed weekends and some public holidays)
- To find out more about myeloma and the work of Myeloma UK, visit www.myeloma.org.uk or follow us on Twitter @MyelomaUK and Facebook, facebook.com/myelomauk/
10 MYELOMA RED-FLAG SYMPTOMS
- Persistent or unexplained pain for more than 4–6 weeks, particularly in the back or ribs
- Easily broken bones or unexpected fractures
- Experiencing either frequent urination or minimal to no urination
- Frequent or hard-to-clear infections
- Swollen legs or abdomen
- Tiredness that doesn’t improve with rest (fatigue)
- Nosebleeds or unexplained bleeding or bruising
- Unexplained shortness of breath
- Unexplained weight loss
- Numbness in the feet, hands, or legs
Notes to editors:
The 851 diagnosed deficit reflects reduced diagnoses during the COVID-19 pandemic compared to expected numbers based on pre-COVID-19 incidence data:
- The deficit is for the 24 months from March 2020 to February 2022 (inclusive). This period spans the first UK lockdown until the lifting of most COVID-19 legal restrictions in England.
- The deficit: we calculated the expected number based on the pre-COVID incidence from the 12 months from January to December 2019 and multiplied it by 2 to account for the equivalent time during the pandemic.
- Approximately 9,648 diagnoses would have been expected over the 24-month pandemic period.
- Between March 2020 to February 2022 (inclusive), a total of 8,797 cases were actually diagnosed: 851 fewer cases than expected.
- The data is for England only.
- This data is sourced from the COVID-19 rapid cancer registration and treatment data (https://www.cancerdata.nhs.uk/covid-19/rcrd).
|
