Incurable but treatable

Background

Chronic blood cancers can be very different to ‘standard’ cancers and this can cause problems for patients as they negotiate their treatment pathway. These cancers are generally thought of as incurable, but can often be successfully treated, or simply observed (“watch and wait”). They can cycle through periods of calm lasting for many months or years and then move swiftly into progression. These cycles can repeat multiple times, much more so than for other cancers. With some blood cancers this is ongoing, so that a definite ‘post-treatment’ phase is never reached, as further treatment is always a possibility. Patients may live a normal life span, however, eventually dying of other conditions, while still having the blood cancer.

Research questions and aims

Our research study asked people how they understood what was happening to them, including how Health Care Professionals (HCPs) explained and helped them to understand their condition. We also wanted to know how the uncertainty was affecting them. With this information we aim to inform and improve clinical practice for this particular group of patients. To our knowledge this is the first study that has focused solely on the experiences of patients with chronic blood cancers.

Understanding

The research uncovered a rich seam of information about the experiences of the patients and their differing responses to their diagnosis, ongoing "watch and wait" and treatment. It revealed that knowledge about blood cancers is not as widespread in the general population as knowledge of other cancers. The mental map of cancer diagnosis and treatment that most people held was one of immediate action, often surgery to “remove the cancer” and ongoing radio/chemo therapy with an end at some point, either end-of-life or ‘survivorship’. Chronic blood cancers did not fit this pattern and were harder to explain and come to terms with because of this.

The fact that diagnosis was sometimes a complete surprise, the result of a test for something else, in otherwise fit and active people; and that the cancer didn’t always have to be treated immediately, was a difficult concept for many to understand and accept. Shock and fear at such a diagnosis left them feeling vulnerable and desiring action of some sort.

A lack of understanding, by both the patient and those surrounding them, might lead to non-disclosure of the diagnosis. It is hard to tell others when you aren’t sure yourself, or feel that they won’t understand and the disclosure will just upset them. 

Uncertainty

This fluctuating existence without an end, can be challenging and wearying for the patient and their loved ones. The cycle of hope; of good and bad news and uncertainty, requires large amounts of resilience for all concerned. Some people can find such uncertainty to be the hardest part of their diagnosis, and it can result in severe and ongoing emotional distress. This can sometimes be a greater problem than any physical symptoms they are experiencing. 

With respect to the future, one patient described the distress she continually faced wondering for how long her disease might be ‘manageable’; comparing this to the unpredictability of a game of ‘Russian roulette…someone has got a gun against my head…’.

Impact

Some people were reassured that their cancer did not pose an immediate survival threat. For others, the uncertainty and the need for constant watchfulness, was a big emotional burden for their day-to-day existence. They felt the responsibility of noticing when the cancer became more active again. The “watch and wait” approach could be hard to come to terms with and to explain to anxious relatives, friends and work colleagues.

Despite a chronic cancer diagnosis being ‘non-curable…but treatable’ there could still be unwelcome news that the survival rates for their condition were not as long as they'd hoped for. One person with myeloma remembers ‘that was kind of a big shock in itself, a huge shock (finding that only) 50% of people survive 5 years’. These aspects of the diagnosis could have a great and enduring impact on some people's mental health. 

We found that participants did appreciate the information and care shown to them by their HCPs when they saw them, and it often made a big difference to them. However long periods of "watch and wait" meant that there was less contact with HCPs and attendance at clinics. This meant limited opportunities to seek advice and reassurance.

Some people were left with the burden of knowledge, but no remedy or action. Over time worries could develop, while emotional and/or information needs were being missed, leading to decreased quality of life and distress for some patients. This is an area where more awareness of the emotional issues of chronic disease is needed by HCPs, and due care given to them, alongside the needs of people with more severe physical symptoms. New health policy interventions are also required to counteract these problems.

The research

Dr Debra Howell, who lead the research, sums up the importance of this work:

"Directly hearing the voices and experiences of people living with chronic cancer is important if clinical services are to meet their needs. Far too often research on haematological malignancies includes patients with both chronic and acute types, when in fact these are very distinct cancers with disparate pathways.

Our in-depth interviews uncovered important issues that we hope will further understanding among clinical staff and researchers about these chronic blood cancers, and in particular the difficulties that uncertain pathways often entail for patients.” 

Read the full research 

A note on how we undertook the research

We spoke to 35 patients in depth about their experiences. 10 relatives were also involved. They are all treated in hospitals that are part of the Haematological Malignancy Research Network. Care is delivered across 14 local hospitals according to national guidelines. Patients enter the network at diagnosis (roughly 2,400 annually), and have diagnostic, prognostic and clinical data (including all treatment and responses) collected from their medical records. They then chose to talk to our researchers about their experiences.   

The patients were chosen from specific disease subtypes (chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma, and myeloma), both sexes and various age-groups and socio-economic backgrounds. It was important to include patients whose perceptions may have altered over time, during prolonged periods of watch and wait, or following treatment, to capture as broad a range of views as possible. To counteract the influence of memory, we also invited some recently diagnosed patients to take part; reference to patient diaries and contributions from relatives also enhanced recall.

Despite our efforts we were unable to recruit patients from Black and minority ethnic backgrounds. Patients who were too ill to speak to us were also not included. We therefore recognise that the views of our participants are unlikely to reflect those of the entire population with these diseases. Nonetheless, it is highly likely that a large proportion of our findings are transferable to other UK areas, and also countries with similar health-care infrastructure and universal health-care coverage.