To prepare for Secondary Breast Cancer Awareness Day on Monday (13 October) we asked people with secondary breast cancer how they deal with symptoms and side effects such as pain. Secondary breast cancer is when the cancer cells have spread from your breast to other parts of your body. It can be treated but is no longer curable.
Symptoms can be treated through palliative care which is about managing the symptoms of cancer or the side effects of treatment. However many people associate palliative care with the end of life - 70% of the 204 people who answered our survey for instance.
The earlier people with secondary breast cancer are introduced to palliative care the better their quality of life according to research. So it is worthwhile understanding more about the support you can get through palliative care when you've had this difficult diagnosis.
What is palliative care?
We know that talking about palliative care can be very difficult for people with a secondary diagnosis as well as for their families and friends. So it may be easier to think about it as wide-ranging support that can involve physical psychological spiritual and social aspects.
It's provided by healthcare professionals who are experts in treating cancer symptons and the side effects of treatments such as pain breathlessness and fatigue.
The palliative care team is often available in the evenings during the night and at weekends.
Some of the areas palliative care covers are:
- support and information for the patient and their family and close friends including practical financial and emotional
- helping people with a life-limiting illness to maximise their quality of life
- helping patients to get the best from any treatments including adjusting drug dosages
- symptom control and pain management
- access to complementary therapies
- listening to the patients’ wishes when planning their end of life and helping to ensure those wishes are carried out
- helping families come to terms with the diagnosis and bereavement.
How to access palliative care
You'll need a referral from your specialist breast cancer team or your GP (local doctor). If you're struggling with any symptoms don't be afraid to ask for an immediate referral. It is OK to ask for what you need to help you live with your diagnosis.
But the level of service available varies; for example 41% in our survey had never been offered a referral to a palliative care team.
So we have launched the petition Make secondary breast cancer a priority.
The more people who sign it the better we will be able to lobby health policy decision-makers for better services and a clear care pathway for everyone with a diagnosis of secondary breast cancer.
We're here to help
Our Helpline is here to offer emotional support and a listening ear as well as provide information.
If you find talking directly about this subject difficult but you have questions you can get in touch through our Ask the Nurse email service.
We have a Live Chat web-based facilitated discussion group for women diagnosed with secondary breast cancer on a Tuesday evening 8.30-9.30pm.
We also run Living with Secondary Breast Cancer meet-ups in various places around the UK.