Living with and beyond a haematological malignancy

Welcome to the third in our series of resources from the Cancer Nursing Partnership to support nurses in delivering the Recovery Package recognised in the Cancer Taskforce Strategy


Welcome to the third in our series of resources from the Cancer Nursing Partnership to support nurses in delivering the Recovery Package recognised in the Cancer Taskforce Strategy

Risks for developing a haematological malignancy include age, genetic predisposition, obesity and smoking. Picture: SPL

Disease prevalence

Malignant haematology covers a variety of blood disorders, the most common being leukaemia (acute and chronic), lymphoma (Hodgkin lymphoma and non-Hodgkin lymphoma) and myeloma. In 2014, of the 350,000 new cases of cancer, almost 21,000 were haematological cancers (Cancer Research UK (CRUK) 2014) see table below.

Total new cases per year (UK) Deaths per year (UK) Survival at ten years or more (2010-11, England and Wales) Incidence (ranking for how common across the UK) % of all new UK cancers
All cancers 356860 163444 0.5
Leukaemia 9534 4584 0.46 Males 10th 3%
Females 11th
Hodgkin lymphoma 2106 355 0.8 Males 18th <1%
non-Hodgkin lymphoma 13605 4801 0.63 Males 7th 4%
Females 7th
Myeloma 5501 2928 0.33 Males 15th 2%
Females 17th

Source: CRUK, 2014

For patients diagnosed with leukaemia, 52% will be over the age of 70 years. In Hodgkin lymphoma and non-Hodgkin lymphoma, approximately 50% of the newly diagnosed cases are people aged 45 years and 70 years old respectively. Hodgkin lymphoma tends to be diagnosed early, while non-Hodgkin lymphoma is at a later stage in comparison. Incidence of myeloma tends to be in older age with 45% of new cases being people over 75 years, and the highest number of cases among the 85-89 year olds (CRUK 2014).

Risk factors

The risks for developing a haematological malignancy include age, genetic predisposition, lifestyle choices (obesity) and exposure to toxic chemicals (smoking) or ionising radiation. In Hodgkin lymphoma, other factors such as Epstein-Barr virus or HIV have a role to play (CRUK 2014).


Following a full history and physical examination, people will require a series of blood tests as well as radiology imaging (for example, a PET-CT scan) and in some cases a bone marrow examination.

People with suspected myeloma will also have samples of urine collected over a 24-hour period to analyse paraprotein and a specialised blood test for light chains. The investigations are tailored towards the suspected diagnosis and require the input of specialist teams.


Treatment for a haematological malignancy in the UK is usually undertaken following a multidisciplinary team decision and discussion with the patient and family. In an acute setting, such as a person newly diagnosed with acute leukaemia who is presenting in crisis, treatment will often start the same day.

The person may well have visited their family doctor a couple of times in the previous week with gradually worsening symptoms that prompted a blood test. Once the blood sample has been processed by the laboratory and a provisional diagnosis made, there is a rapid cascade of actions resulting in admission and further urgent investigations, and ultimately chemotherapy.

For those with a less aggressive disease, such as indolent lymphoma, a watch and wait approach may be taken. This approach may be just as distressing to some people as they are told they have a cancer, but that treatment is not warranted, leaving them in a state of limbo.

Once remission is achieved, depending on the type of haematological malignancy a person presented with, a haemopoietic stem cell transplant may be warranted. This may be either an autologous (your own harvested cells) or allogeneic (cells from someone else) transplant that could be from a sibling, a parent, a child, from a donated cord blood or an unrelated volunteer donor.

Survival rates

The ten-year survival for all types of leukaemia is 46%, equating to 27,100 people living beyond their diagnosis at ten or more years.

For people with Hodgkin disease, the statistics are even better – 80% survival at ten years. For people with Hodgkin lymphoma aged between 15 and 39, survival at five years is 95% compared with only 25% of people over the age of 80. For people with non-Hodgkin lymphoma, the survival figure at ten years or more is 63%.

Younger people fare better, with 90% survival at five years compared with only 40% for those aged 80 and above. The worst category is for people with myeloma; only 33% survive at ten years or more. This is also reflected in younger people; only 75% of 15-49 year olds survive at five years. Just 25% of 80 year olds survive beyond this time (CRUK 2014).

Key issue for nurses

People with haematological malignancy are from a diverse range of ages and backgrounds and have complex needs. Nursing in this area is rewarding, but often stressful. Many people are admitted for protracted lengths of time, frequently several months, especially during transplant.

This means nurses are at the central point of their care and become a focus of attention for the person and their family. They are the familiar face that enables a patient to relax and be comfortable in an otherwise unusual environment.

As there are several diseases with differing treatment trajectories all in one department, it takes a nursing team with experience and good depth of knowledge to understand the different needs of their patients. People are repeatedly re-admitted with complications related to their chemotherapy/radiotherapy and frequently with infective problems.

Patients with late effects of transplant have significant needs and will often be under the care of multiple specialty teams. In a long-term follow-up clinic, the haematology clinical nurse specialist supports and guides the patient and family and needs to have a good knowledge base to understand and relay the possible and probable side effects and complications of treatment to the patient.

An informed and empowered person with cancer is one who has confidence in the team and will manage their disease better.

Essential facts covering the consequences of haemato-oncological disease

Consequences vary depending on the extent and type of treatment given. New therapies have relatively short follow up and clinicians should be mindful of emerging late effects. They are most extensive in Allogeneic (donor) Haematopoietic Stem Cell Transplantation recipients, presenting both early (Golovchenko and Moiseev 2004) and late (Majhail and Rizzo 2013). They can be physical (second malignancy and gonadal dysfunction, for instance) and psychological (such as anxiety and depression) and can occur years, even decades, after treatment. People living with cancer who experience late effects have reduced life expectancy, along with greater morbidity, compared with an age adjusted population (Socié et al 1999) with:
  • Significantly poorer physical and mental health.
  • More unmet care needs.
  • Significantly greater health service use compared to people living with and beyond cancer without late effects (Treanor et al 2013).
Post HSCT screening guidelines (Majhail et al 2012) provide no direction on implementation and extensive inconsistency across centres has been identified (Hamblin et al 2017). Successful delivery of any haemato-oncology and HSCT service must include:
  • Assessment tools incorporating clinical and psycho-social consequences.
  • Access to a range of medical and allied health specialists.
  • Access to psychological services.
  • Implementation of second malignancy screening, if required.
Protocols should reflect the different needs of adults and children and consider those who transitioned to adult care.

Experts’ view

John Murray

John Murray is a nurse clinician in the haematology and transplant unit at the Christie Hospital NHS Foundation Trust. He is also chair of European Bone Marrow Transplant UK Nurses and Allied Professions Group and president of European Bone Marrow transplant nurses group

Michelle Kenyon

Michelle Kenyon is a clinical nurse specialist at King’s College Hospital, London

‘Haemato-oncology patients often have high levels of complex, unmet needs. Fear of recurrence is one of the most frequently cited psychosocial concerns in our post-transplant long-term follow-up clinics.

‘For some people, treatment is experienced as a neat package completed in months, but for others multiple cycles of intensive therapy requires hospitalisation with uncertain remissions, relapses and the need for further intensive therapy often culminating in HSCT.

‘For people who require allogeneic HSCT, the added uncertainty of graft-versus-host disease (GvHD), either acute or chronic, can be devastating to them and the whole family. GvHD is a major cause of non-relapse morbidity and mortality affecting 30% to 40% of patients (Dignan et al 2012).

‘First line therapy with systemic steroids is effective in approximately 40% of people globally and 30% have a long lasting response. Those who become steroid refractory have a dismal long-term prognosis and work through a variety of second and third line treatment options (Magenau and Reddy 2014).

‘Recovery following any therapy is individual, but many experience enduring effects that can affect physical and mental health.

‘Complete recovery is the ultimate goal, but requires a complex infrastructure of support from carers, family members and friends as well as a mix of healthcare professionals across specialist tertiary, secondary and primary care, including allied health professionals who work in areas such as psychology, physiotherapy and dietetics.’


  • Cancer Research UK (2014) Cancer Statistics (Last accessed: 21 September 2017.)
  • Dignan FL, Clark A, Amrolia P et al (2012) Diagnosis and management of acute graft-versus-host disease. British Journal of Haematology, 158, 1, 30-45.
  • Golovchenko RA, Moiseev SI (2004) The frequency of early complications after allogeneic haematopoietice stem cell transplantation (HSCT) with myeloablative (MA) and non-myeloablative (NMA) conditioning regimen. Biology of Blood and Marrow Transplantation. Vol 11,2, Suppl1, 26.
  • Hamblin A, Greenfield DM, Gilleece M, et al (2017) Provision of long-term monitoring and late effects services following adult allogeneic haematopoietic stem cell transplant: a survey of UK NHS-based programmes. Bone Marrow Transplantation, 52, 6, 889-894.
  • Magenau J, Reddy P (2014) Next generation treatment of acute graft-versus-host disease. Leukemia, 28, 12, 2283–2291.
  • Majhail NS, Rizzo JD, Lee SJ et al (2012) Recommended screening and preventive practices for long-term survivors after hematopoietic cell transplantation. Bone Marrow Transplantation, 47,3, 337-341.
  • Majhail NS, Rizzo JD (2013) Surviving the cure: long term follow up of haematopoietic cell transplant recipients. Bone Marrow Transplantation. 48, 9, 1145-1151.
  • Socié G, Stone JV, Wingard JR, et al (1999) Long-term survival and late deaths after allogeneic bone marrow transplantation. The New England Journal of Medicine. 341, 1, 14-21.
  • Treanor C, Santin O, Mills M et al (2013) Cancer survivors with self-reported late effects: their health status, care needs and service utilisation. Psycho Oncology, 22,11, 2428-35.

The essential toolkit is supported by the Cancer Nursing Partnership

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