Julie Croft and Fiona Watt, who both have secondary breast cancer, travelled to Lisbon to take part in an international conference.
Early in 2015, over a cup of tea, we both decided to apply for a grant to attend a global conference on secondary breast cancer.
The Advanced Breast Cancer Third International Consensus Conference (ABC3) took place in November 2015 in Lisbon, Portugal.
If our application was successful, we would be attending the conference as patient advocates – representing the voice of people with secondary breast cancer and highlighting what’s needed to support them.
The conference brings together medical experts and patients from around the world, to get international opinions about how to best manage advanced breast cancer.
We didn’t know what chance we had of getting the grant from the European School of Oncology, and we were grateful for the support from Breast Cancer Care in our application. We were stunned and delighted when we found out we had been successful.
Lisbon, and our first ever international medical conference, awaited (once both of us had had our scans and the news that we were fit to travel).
Why we went to Lisbon
Our motivation to attend this conference came from our experience of Breast Cancer Care’s Living with Secondary Breast Cancer group in Edinburgh. We’ve seen many women, some with young children, being diagnosed, going through many cycles of treatment and hope, but ultimately dying from this disease.
We were keen to know what was happening in the fields of research and treatment developments; what support women and families across the world are able to access; and what, if any, breakthroughs are being made to make a difference and improve quality of life.
Six things we learnt
Here are six key issues that were highlighted at the conference. These were all things we could relate to, from our own experience and from meeting other people in our Living with Secondary Breast Cancer group.
1. Data collection needs to be improved
From discussions at patient advocacy sessions, it was clear how important adequate data collection on secondary breast cancer is. ‘If you do not have accurate figures, how can doctors possibly decide which drugs are effective to use with patients?’ said one patient advocate.
2. Services, including access to medicines and support, vary internationally
We appreciated how well served we are in the NHS. Women in India, for example, do not have access to cheap, good-quality pain relief in the later stages of their disease. Research highlighted how important good supportive care is for people living with secondary breast cancer and their families.
3. Quality of life has fallen
Studies have shown that quality of life has decreased since 2004. There was some very interesting discussion about how to capture data on quality of life. Ideally, people with secondary breast cancer need to be treated within a multi-disciplinary team, and there’s a call to improve psychological support and communication between doctors and patients.
4. Innovation and development has slowed down for new treatments in secondary breast cancer
Statistics show that, worldwide, only 7% of the total funding for research into breast cancer is dedicated to secondary breast cancer (although the percentage is higher in the UK).
5. Public awareness needs to be raised
A survey found that, among the general public, around 1 person in 5 believes that people with secondary breast cancer should keep their diagnosis a secret and not discuss their disease with anyone other than their doctor. This could contribute to the stigma and feelings of isolation associated with secondary breast cancer.
6. The treatment landscape is evolving
There are passionate and committed research teams and clinicians working in different fields of research, all with the same aim to discover better treatments for all types of secondary breast cancer. This gave us hope that more treatments will become available.
Going to the conference was fascinating and inspiring. There’s now an international community of patient advocates, who are discussing ways of improving and giving people access to services and treatment.
Thank you, ABC3 and European School of Oncology, for the travel award. And thanks Breast Cancer Care for supporting our application.
Breast Cancer Care’s Bucket List campaign calls for everyone living with secondary breast cancer to get the care and support they need, every day, from day one.
Bloggers' views are their own and do not necessarily represent those of Breast Cancer Care.