Information is powerful
Catherine Priestley, a clinical nurse specialist, describes a resource pack that can help to empower patients with secondary breast cancer
The impact of a secondary, incurable, breast cancer diagnosis is devastating. There are about 36,000 people with secondary breast cancer in the UK, but the lack of exact figures makes it challenging to plan care services effectively. As a result, patients may not always have access to the information and support they need.
A secondary breast cancer diagnosis can make a huge difference to how someone feels, physically and emotionally. Living with an uncertain future can also take its toll on family and friends.
The women I speak to all have different needs and concerns. For some, having information about their disease, how it is treated and what may happen in the future can be a way of taking back some control. Others, however, prefer to take things day by day.
Nurses in specialist roles who support patients with secondary breast cancer tell us they value being able to provide additional support and information.
Having information to digest in their own time allows patients to return to their specialist team with any worries they would like to discuss further.
In our booklets and other information resources, we aim to help people find answers to their specific concerns. It has become evident just how much people living with secondary breast cancer value access to tailored information, especially when they lack specialist nursing support.
Breast Cancer Care, in partnership with the Christie NHS Foundation Trust’s secondary breast cancer focus group, has launched an updated resource pack for people with the disease. It is the only printed pack on this cancer type in the UK and has been developed with patients and nurses to reflect their experiences.
The resource provides a tool to help people living with secondary breast cancer understand and monitor their condition. It also suggests ways to improve physical and psychological wellbeing, as well as quality of life.
The pack is split into three parts:
- Personal records that allow people to note details of scans and new treatments, as well as diaries to help monitor energy and pain levels.
- A booklet about living with secondary breast cancer. This considers how someone may feel about the condition and contains first-person experiences of others. It can be removed from the pack to make it lighter to carry around.
- A short guide to difficult decisions and choices at the end of life.
While we thought it was important to include sensitive information about the end of life, we also recognised that people will choose when it is the right time to use it. With this in mind, this guide can also be removed from the pack until required.
The resource will inform discussions that patients may have with nurses or doctors. It can also provide a prompt for questions a patient may like to cover at an appointment and can be taken along to record information from consultations.
The pack includes a spinal cord compression alert card for those with secondary breast cancer in the bone who are at risk of this side effect. The small card has the symptoms on one side for patients and information for healthcare professionals on the reverse to ensure patients receive urgent attention.
Growing numbers of people are living longer with secondary breast cancer, so it is vital that patients are equipped with the information and support they need.
If you or one of your team supports people with secondary breast cancer, please share the resource pack to help these patients feel more empowered.
About the author
Catherine Priestley is a clinical nurse specialist in secondary breast cancer at Breast Cancer Care
Find out more
Download the resource pack, or order via calling 0808 800 6000