Claire Gaskell, Macmillan Secondary Breast Cancer Nurse Specialist, The Christie NHS Foundation Trust
Secondary Breast Cancer (SBC), also known as metastatic, advanced or stage four Breast Cancer, occurs when Breast Cancer cells have spread from the breast to other parts of the body, such as the bones, lungs, liver or brain. Secondary Breast Cancer is not curable but it can be treated.
It has been estimated that around 36,000 people are living with Secondary Breast Cancer in the UK and each year around 11,400 people die from the disease. However, there is no accurate figure for how many people are diagnosed each year, how long they are living for, the spread of their disease, or the treatment and support they are receiving.
A report by Breast Cancer Now following their Secondary, Not Second Rate campaign found that less than a third of Hospital Trusts in England are collecting data in full on their patients with secondary breast cancer. You can read the full report here: https://breastcancernow.org/sites/default/files/cool085_the_case_for_change_report_final.pdf
Patients with Secondary Breast Cancer have to live with the physical burden of constant treatment and symptoms of advanced cancer, as well as the emotional and psychological burden of knowing their cancer in not curable. Due to the necessary focus on targets in healthcare, hospital and community services are often prioritised around Early Breast Cancer and End of Life. There is therefore a potential for unmet need as breast cancer patients living with active disease often have a prognosis of over 12 months and will not fit into either of these groups.
‘A lack of support in dealing with the wide ranging impact of Secondary Breast Cancer has a deep impact on the lived experience of people with the disease, on people’s trust in the healthcare system and their healthcare professionals, and on their emotional health and wellbeing’ (Breast Cancer Care 2017).
The Christie Macmillan Breast Cancer Nurse Specialist team became a service focussing on purely metastatic disease in July 2015 following work locally which exposed unmet need in this population. With limited resource available and a median patient life expectancy of 3 years, the team were aware that there would need to be a structured support pathway based on patient need, in order to provide a gold standard service.
You can read here about the type of support provided by the team at The Christie in the first year following diagnosis of secondary breast cancer:
We are a team of nurses specialised in providing support for you and your family and friends. We encourage you to attend your appointment to the nurse-led clinic as this contact then leads on to additional available support, if required. By the end of the first year, we hope that you will be confident to contact us whenever you need to.
- Nurse-led clinic appointment with a secondary breast CNS approximately 4 – 6 weeks after your first medical appointment at The Christie.
- Telephone follow-up clinic with your CNS approximately four months after your nurse led clinic appointment. If it is felt that you would benefit from additional support prior to the telephone follow up appointment, the nurse will discuss arranging this with you.
- Health and wellbeing day 6 – 12 months after your first medical appointment at The Christie. This day is designed to help you live well with secondary breast cancer. The days are run twice a year and have been very positively evaluated by patients and relatives and friends who have previously attended. The day gives you the opportunity to listen to expert speakers such as a medical consultant, senior research dietitian, secondary breast CNS and supportive care CNS. There are also breakout sessions in the afternoon which provide further additional support.
As a team of nurses we are always here for you. In between these appointments, please feel free to contact us at any point.
Outlined is the minimum support you should expect to receive from the service at The Christie. If you would like more information about the support you should receive please contact your local breast care team.
In Greater Manchester we are committed to providing equality of care for all patients diagnosed with Secondary Breast Cancer. GM Cancer are working with other organisations to review services across GM and identify possible inequalities. If you have any concerns about your diagnosis you can speak to your local breast care team and they will support you.
Breast Cancer Now provides regular support group meetings in Manchester. You can find more details here on upcoming meetings:
You can also see here the types of topics that are discussed:
The Secondary, not Second Rate campaign that was completed by Breast Cancer Care in 2017 was hugely impactful and although a couple of years old now, still provides the best overall picture we have about the issue in the UK. You can read the reports here: https://breastcancernow.org/get-involved/campaign-us/secondary