Three experts from our panel debate at Britain Against Cancer share their thoughts on the needs of patients living with secondary breast cancer.
On 6 December 2016, Breast Cancer Now held a panel session at Britain Against Cancer, one of the UK’s largest and most important cancer conferences. Our session, “Are we ignoring the needs of patients with secondary cancers?” put the spotlight on the key needs of patients living with secondary cancers.
Secondary breast cancer, also known as metastatic or advanced breast cancer, is when the cancerous cells from the primary breast tumour have spread to other parts of the body, such as the bones, liver, lungs or brain. A diagnosis with secondary breast cancer brings with it a whole set of new challenges and unique needs compared to primary cancers.
The debate touched upon some of these key needs, including early diagnosis, data collection, access to dedicated metastatic Clinical Nurse Specialists, managing side effects, and models of best clinical practice.
Q&A with our panellists
Meet our session chair, Vikki (above, left), and two of our panellists Yola (above, middle) and Tracy (above, right). We asked them a few questions about the experience of speaking about the needs of secondary breast cancer patients at the conference.
Vikki Orvice - Sports Journalist and secondary breast cancer patient. Follow Vikki on Twitter: @vikkiorvice
Yola Kwasnicka - Secondary Breast Cancer Patient Representative
Why is it important to discuss the needs of patients living with secondary cancers?
Vikki: More and more people are living longer and longer with relatively normal lives despite having secondary cancers. These needs are very different to patients with primary cancers, however, both physically and emotionally, and often the drugs themselves needed to control the disease can cause long-term side effects - especially fatigue.
Tracy: Metastatic or secondary breast cancer is a progressive and debilitating condition which can have a significant impact on quality of life. Patients live not only with physical symptoms but also the psychological distress and emotional burden knowing the disease is now incurable with a life dominated by treatments. These needs are therefore unique and complex and it is essential that this is reflected in the services patients receive. This starts with recognising the needs and what can be done to address them.
Yola: As patients we are experts in our own needs: we know how we feel, how we are affected and what would make us feel better living with a disease that can’t be cured. If we can express our feelings and needs to those that can help us, support us, and treat us, it will help them enable us to make a difference in our own lives and others by improving the care and services they offer. We know that being in control of our disease can help our survival rates. What better way to be in control, than to work in partnership with raised awareness and knowledge!
What key message did you take away from the panel discussion?
Yola: There is strength in unity and those coping with secondary cancers are remarkable in their positivity. Those coping with secondary cancer all seem to have and experience the same or similar feelings, thoughts and fears. Now there is an opportunity for the patient’s voice to be heard and for responses to be driven by this.
Tracy: Current care is inadequate. For example, although there are clear pathways for treatment and care within primary breast cancer, there is no comparative structured support within the health system for women diagnosed with secondary breast cancer. The frustrations in the room were clear proof of this!
Vikki: There is a lack of understanding as to what a secondary cancer actually is. Patients can be written off as terminally ill instead of having an incurable disease when with the right treatment and support the disease can be controlled for years and patients able to work full-time. This extends even to healthcare professionals at the point of diagnosis – there is a need to educate GPs to allow them to do joined up thinking between primary cancers and secondary cancers. It’s also clear that a postcode lottery does exist for available drugs, treatment and support.
If one thing were to change to address the needs of patients with secondary cancers in 2017, what would you want it to be?
Yola: Improved and earlier diagnostic processes for those that have already had primary breast cancer.
Vikki: Improved allocation of drugs as the current system means many are missing out on vital treatments.
Tracy: Evidence tells us the second diagnosis is far more devastating than the initial primary diagnosis. We also know that approximately 70% of the British population do not even know what secondary cancer is. Therefore, I believe the starting point has to be to raise awareness of secondary cancers.
To find out more about secondary breast cancer, please visit our online guide.