How attending research conferences makes sure the voices of people affected by breast cancer are heard

Tell us about how you came to work with us

After my diagnosis I became increasingly interested in finding out more about breast cancer, its detection, treatment and the support available for those who have had it.

I took early retirement at 56, and soon after that the advert for the position of patient representative on the Science Strategy Committee popped up. I was interviewed and have been on the committee for 3 to 4 years.

What were you hoping to get out of attending the conference?

I first attended the UKIBCS conference 2 years ago, and this time around I went in feeling like I was likely to get even more out of it.

It was a great opportunity to meet all the other patient advocates and chat about their experiences, treatments they have had and their hopes for the future. This is very important for me personally, and for my work on the committee.

I felt that I also went into this year’s conference with a much greater understanding of the committee’s work and my role within it, and so I really enjoy hearing how the research projects that I am aware of are coming along.

Was there a particular session that really stood out to you?

I enjoyed all of the sessions I attended and found them to be very relevant to me, but a few really stood out.

A session I particularly learnt a lot from was ‘“Like Falling off the edge of a Cliff”: How to manage the gaps after adjuvant treatment in primary breast cancer’, by Juanita Caseley.

Anyone who has been through surgery, radiotherapy and chemotherapy will appreciate how abandoned you can feel at the end of treatment. 50% of people have a long term distressing physical symptom and 30% suffer with psychological stress. Juanita and her team are looking to start a nurse-led follow-up service to address this. 

I also have a great interest in dormancy and late recurrence, particularly common in strongly ER-positive tumours such as I had. We had a fascinating talk from Professors Mitch Dowsett and Nick Turner, who showed us how tumour DNA that can be detected in the blood and how other specific cancer ‘biomarkers’ are going to help with early detection of cancer coming back. There’s still more to be done before this can be used in clinical practice, but watch this space!

I also have to mention the fantastic session sharing the latest developments towards personalised screening. Again, as my mammograms always came back negative with my tumours not seen, personalised screening will help others like me with dense breasts.

Did the conference change how you think about breast cancer research?

Attending the symposium massively helps with my position on the Science Strategy Committee. The more I hear about research the more it reinforces what I understand about the disease.

It also makes me feel incredibly optimistic about the future. There were over 700 people at the conference. Multiple lecture halls full of clinicians, researchers and patient advocates all working alongside each other.

Together, their work will help us to increase early detection of breast cancer, improve currently available treatments, and get this disease to become something we won’t have to worry about in the future.

Can you give our supporters one key takeaway?

I’d want them to know that it really is important for patient advocates to attend conferences like these. There is nowhere else that you can listen to such amazing talks, all relevant to us, and also get to question some of the clinicians and researchers’ studies.

I asked a few questions via their anonymous messaging system, and they were answered. It reminds the clinicians and researchers why their work is so important, and reminds us that our voices need to be heard.