Clare Jonas
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Why can it take so long to diagnose myeloma?

Clare Jonas
Posted by
09 May 2018

At the University of York, Dr Debra Howell and other members of the Haematological Malignancy Research Network (HMRN), funded by Bloodwise, have been asking people with myeloma to talk about their experiences from when they first felt ill to their diagnosis, to better understand the possible events that could happen during this time. Below, you can read a summary of this work.

A medical professional taking the blood pressure of a patient
A medical professional taking the blood pressure of a patient. Credit: John Jones (https://toolstotal.com/)

If you or someone you know has myeloma, you may know that it can take a long time to diagnose. Of the 4200 people diagnosed with myeloma every year, some will have to visit their GP on several occasions before they are sent to see a specialist at the hospital. Even when someone is referred to hospital with symptoms of myeloma, it might not be because their doctor thinks they may have myeloma, but due to other unexplained symptoms.

One of the major problems of diagnosing myeloma is that the symptoms – including bone pain, anaemia, frequent infections, and fatigue – could be indicative of many other health conditions, or even just the process of ageing.

It is important that myeloma is diagnosed and treated as soon as possible, to prevent or minimise the complications that can be caused by this cancer, such as bone and kidney damage. So, to better understand why diagnostic delays occur, Dr Howell and others from the Bloodwise-funded HMRN team conducted an in-depth interview study involving people with myeloma. The findings from this study were recently published in the scientific journal PLOS ONE.

The research team interviewed 20 people with myeloma (and their relatives, if they also wanted to take part), asking very detailed questions about their experiences before diagnosis. People were asked about all the symptoms they had, how these affected their life, what they thought had caused the symptoms, and what they did about them, for example discussing with family members, or going to see their GP or nurse. They were also asked if they thought they could have been diagnosed sooner, what they thought went well during this time, and what could have been improved. The researchers then looked for similarities and differences in the stories people told.

An interviewer holds a pen above a clipboard while talking to another personThe researchers interviewed people with myeloma to understand what had happened in the time between first feeling ill and myeloma diagnosis.

Initial myeloma symptoms and thinking about asking for medical help

Interviewees’ experiences were very varied. Many had never heard of myeloma before their diagnosis, nor knew of its symptoms. They also reported a wide range of symptoms they thought could have been caused by their myeloma. Many said they had suffered from bone and joint pain, which is to be expected as myeloma can cause damage to the bones. However, they also mentioned other symptoms, such as severe fatigue, ongoing infections and stomach problems. Rather than experiencing a clear symptom that would point to myeloma (such as a breast lump in breast cancer), symptoms were described as ‘vague’ and people said they thought they could be a sign of other less serious health problems, or just part of ageing. For these reasons, interviewees sometimes delayed asking a healthcare professional for advice. Even looking back, some found it hard to tell which of their symptoms were due to myeloma and which had occurred for other reasons.

People said they took between one and seven months to seek medical help after first noticing symptoms, usually because their symptoms became worse and interfered with the things they would normally be able to do, such as driving, working or taking part in their usual sporting activities. Sometimes, family members encouraged them to seek help. They also described looking for advice in several different places: all saw their GP at some point, but some people consulted specialist primary care nurses, the NHS helpline, or a physiotherapist.

Experiences with GPs

Interviewees reported a lot of variation in the time between first asking for medical help and being diagnosed with myeloma – 2 weeks to 17 months. More than half thought their diagnosis could have been made sooner. One reason for a long delay in diagnosis was that GPs did not think their symptoms were connected to myeloma or cancer. Interviewees also said GPs (like the interviewees themselves) thought their symptoms might be due to more common, less serious illnesses, such as sciatica or infections that would resolve in time.

People often described complicated pathways to diagnosis, which involved new symptoms, or the worsening of existing symptoms. These symptoms could prompt them to reassess the initial diagnosis from the GP, but reaching a conclusion and making a follow-up visit could take some time. Interviewees and their families were generally convinced by initial diagnoses, and in some cases said that this had led them to put off further follow-up visits.

Interviewees understood that myeloma can be difficult to diagnose, and some felt that they had misled their GP when trying to explain their symptoms. Others thought GPs could have known more about myeloma, could have noticed an increase in the number of visits they had made compared to usual, or could have listened more closely to information they were being given about symptoms. Not all GPs encouraged follow-up visits. Some people said they were upset because they were made to feel that they were wasting GPs’ time, and that the lack of an explanation for symptoms had caused them to become distressed and to suspect that they may be depressed.

Beds in a hospital wardViews on hospital care were largely positive

When a hospital referral occurred, people often weren’t sent straight to the haematology department, where myeloma would normally be treated. This was usually because myeloma was still not suspected at the time, unless they had had an abnormal blood-test result specific to myeloma.

Several interviewees were initially referred to the gastroenterology department (which deals with stomach and intestine problems), often for anaemia. Quite a few people went to Accident and Emergency, with some making the decision to go there themselves, and others being advised to attend by a healthcare professional. Once they were seen in the hospital, people said progress towards diagnosis was more rapid, even if they had initially been referred to non-haematology specialists. Views on hospital care were largely positive.

A case in point is Andy Finch, who is living with myeloma. Back in 2012, Andy went to his GP with general flu-like symptoms and abscesses on his tonsils. This led to a visit to the Ear, Nose and Throat ward at his local hospital. “Within four days I had a haematology consultant sat in front of me delivering a diagnosis of myeloma. Thankfully the hospital were quick to reach this diagnosis after I was admitted.”

What could improve the pathway to diagnosis?

Interviewees mentioned two major improvements that could be made. The first was for medical professionals to reassess symptoms sooner and more willingly, which would reduce the time between the initial (incorrect) diagnosis and the final diagnosis of myeloma. The second was for GPs to ask people to make follow-up appointments when there are multiple possible explanations for symptoms, so that symptom progression can be monitored.

The researchers note that the unclear symptoms of myeloma make it very difficult to diagnose. In addition to the improvements suggested by interviewees, the researchers recommend that people are also aware of what is and is not normal for them, so that they are easily able to recognise changes and seek help for these. They also recommend that systems are in place for GPs to monitor how frequently people are visiting, so sudden increases in visits can be noted and acted upon.

What next?

Dr Howell says, “The stories people in this study told us have helped to clarify the reasons why myeloma is such a difficult cancer to diagnose. Our findings can be used to influence changes to practice that will hopefully improve time to diagnosis. Such issues have long been an important part of HMRN’s ongoing programme of work, and we will continue to monitor patient pathways in the future. Our next publication explores similar issues, but in patients with lymphoma.”

Dr Debra Howell (R) discusses research with HMRN research fellow Dorothy McCaughan (L)

Dr Debra Howell (R) discusses research with HMRN research fellow Dorothy McCaughan (L)

Myeloma facts

Myeloma is a type of cancer which affects plasma cells - a type of white blood cell which produces antibodies to fight infection. When you have myeloma, too many abnormal plasma cells are made in your bone marrow. Symptoms are wide-ranging, but can include bone pain, feeling sick, breathlessness and fatigue. Some people may not have any symptoms and may be diagnosed by chance through routine blood tests.

Myeloma is not usually considered a curable disease, but it is treatable. Treatment aims to achieve a period of remission, where there is no sign of myeloma, or the disease is stable. The treatment and outlook for a particular person will depend on their specific circumstances and general health.

On average, 11 people will be diagnosed with myeloma today. Sadly, many of those people will not survive beyond five years. With your help, our researchers can continue to find ways to improve the lives of people with myeloma. Find out more about our fundraising. Find out more about our research.

Support and information

If you need support, or would like to talk to someone about myeloma, our Support Line is open Monday-Friday 10am-4pm on 0808 2080 888.

Bloodwise also has a newly updated booklet on myeloma, which includes information on symptoms, diagnostic tests and the range of treatments. Order or download a free copy of our booklet.