How Breast Cancer Now Voices helped researchers understand people’s perceptions and understanding of late side effects to the heart.
Our Breast Cancer Voices, made up of people whose lives have been changed by cancer, helped with research into radiotherapy. The researchers wanted to understand what patients think of the risks of late effects on the heart after radiotherapy. These Voices provided vital support and enabled the research to be done.
Radiotherapy and late side effects to the heart
Some people have radiotherapy as part of their breast cancer treatment. This treatment aims to destroy any cancer cells that may remain after having surgery.
A technique called Deep Inspiration Breath Hold (DIBH) can help protect the heart from being affected by radiotherapy given to the left side. It involves taking a deep breath in and holding it for a short time. By breathing in deeply, your lungs expand and move the wall of your chest away from your heart. This can reduce the dose received by the heart.
Although modern radiotherapy techniques and equipment will reduce the dose, some late effects to the heart can still happen. And, some women will develop heart problems months or years after treatment.
Exploring patients’ understanding of radiotherapy side effects
Amy Lynch, an MSc student at Sheffield Hallam University, wanted to explore patients’ perceptions and understanding of late side effects on the heart after radiotherapy. She was supervised by Dr Amy Hancock, a senior lecturer from the University of Exeter. And by Neill Roberts, a consultant breast therapeutic radiographer from Leeds Teaching Hospitals and Sheffield Hallam University.
Breast Cancer Now helped promote the study through our Voices network. This gave women diagnosed with breast cancer the opportunity to take part in this research.
Overall, 10 women took part in individual interviews and kindly shared their experiences. The interviews took place over the phone or via Microsoft Teams.
Research questions and aims
The researchers asked women who had received radiotherapy for left-sided breast cancer about their:
- Awareness, understanding, and perception of risks around late side effects on the heart
- Experiences with receiving or accessing information about late side effects on the heart
- Engagement with healthy behaviours for your heart and how this was influenced by cancer treatment
- Needs and preferences around receiving information on late effects on the heart
The results of the study
The researchers found that the women did not have much awareness and understanding of late side effects to the heart following radiotherapy. The participants said they received a lot of verbal and written information before starting radiotherapy. But, they thought specific information about the risks was minimal. And in some cases non-existent, even during the consent process.
When healthcare professionals did mention potential risks, it was usually about how risks would be managed. For example, by using Deep Inspiration Breath Hold (DIBH). The participants also felt they weren’t aware how risks would be managed long term.
The research also demonstrated that there’d been a lack of information provided to these women at follow up. This included information about maintaining heart health and how to spot risks to the heart associated with radiotherapy.
Some participants were later curious about possible implications after treatment, especially after viewing the advertisement for this study. This led to some participants searching for information about healthy behaviours.
Future recommendations
This study found that there’s a need for specific information and support around long term heart health after receiving radiotherapy. And the researchers hope that these findings will help to develop ways to support patients in the future.
Made up of people whose lives have been changed by breast cancer, Breast Cancer Voices use their diverse experiences of breast cancer to shape and improve our work and change the future of breast cancer. These Voices help us accelerate research and provide vital support, in every way we can.