Blood cancers

Fatigue and fear of relapse remain concerns for lymphoma survivors

Better survival rates for lymphoma mean there is greater need for practical and psychological support services for patients,  the Leukaemia Foundation says.

A new report released by the Foundation shows that more Australians with lymphoma are surviving but they are also experiencing fears of relapse, anxiety, depression and isolation.

And despite survival rates jumping from just 52% in the early 1980s to 76% today, patients diagnosed in regional Australia are still battling access to specialist treatment and financial barriers, according to a new global patient survey.

Key findings from the Lymphoma Coalition’s 2018 Global Patient Survey – Australian report include:

  • Fatigue, changes in sleep patterns and trouble concentrating are the most frequently reported physical conditions.
  • Neutropenia and tingling are the most commonly reported medical issues during treatment, while numbness and tingling are frequently reported after treatment.
  • Changes in relationships with loved ones, friends or co-workers/social life and anxiety are the most commonly reported psychosocial issues.
  • Fear of relapse is very common after treatment, with some patients even experiencing it at eight or more years after treatment. Fear of relapse is associated with feelings of anxiety, depression and isolation, which are not often discussed with the doctor.
  • Fatigue peaks immediately following treatment, as well as at three-five years and even 8+ years after treatment. Fatigue affected respondents’ independence, but more so their lifestyle, with general activity suffering a large impact.
  • Financial issues constitute a barrier to treatment, followed by access to treatment centre/prohibitive travel. Specialty physician access was more of an issue for people in rural areas.

Leukaemia Foundation CEO Bill Petch said the survey findings show that continued support for Australians living with lymphoma is crucial to improve their access to treatment and well-being after treatment.

The Foundation offered services such as accommodation close to treatment centres and transport to medical appointments in major cities for patients living in regional areas, Mr Petch said.

People living with lymphoma also need to have access to credible and trusted information to make informed decisions about treatment options and accessing new therapies, he added.

“We are working to deliver a new information platform for all people living with blood cancer which is a one-stop-shop for information and resources,” said Mr Petch.

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