Julie was diagnosed with triple-negative breast cancer in March 2023. Throughout her treatment, she wanted more control over decisions, and she wanted her doctors to listen to her concerns. Now, as a Breast Cancer Voice, Julie uses her experiences to advocate for others and improve researchers’ understanding of breast cancer.
Tell us about your diagnosis
I’m Julie. After finding a small lump while showering, I was diagnosed with primary triple-negative breast cancer at the age of 47. There’s no history of breast cancer in my family, so it came as a complete shock. I was absolutely terrified.
What was treatment like?
My doctors told me I would have a lumpectomy, chemotherapy, and then radiotherapy. During my treatment, I felt an overwhelming need to raise my voice. I wanted my healthcare team to listen to me, and when that didn’t happen, my mental health took a turn for the worse.
From the day I was diagnosed, I knew I wanted to have a double mastectomy because I simply didn't trust my breasts. I found it difficult to touch them to check for any changes so I was worried I'd miss a recurrence. For my own mental health, I needed to have them removed. It was this part of my story that I felt I really got my voice heard. And by the end of my treatment, I felt that I’d been my own advocate.
Why did you become a Breast Cancer Voice?
Throughout my treatment, I knew that I wanted to give something back. After getting in touch with Breast Cancer Now, they let me know about their Voices network. I read up about it and knew it was something I had to get involved in. It’s important to me that people affected by breast cancer can use their voice to shape things, both for themselves and others.
What do you do as a Breast Cancer Voice?
Every month, I receive an email with updates on projects I can get involved with. It’s easy to tailor the projects to my interests and pick things that suit me. I’m a Louder Voice, which means I get regular emails throughout the month about opportunities I can get involved with.
Since being a Louder Voice, I’ve completed several surveys on a range of topics, like post-surgery bras and sharing feedback about adverts. These take no time at all to complete and the projects are really varied. I’ve recorded a 1-minute video to share at a specialist nurse conference to say thank you to the staff. And I’ve enjoyed taking part in discussions and longer research studies.
Which research study has stood out to you?
One of the longer studies was titled ‘Support with diet and exercise after breast cancer’. The researchers wanted to gather ideas from women for a community-based exercise programme. I was part of a small focus group and it meant I could speak openly about my thoughts and experiences.
I shared how I’d walked every day during chemotherapy and maintained a good diet, which I believed helped me to stay well. During this discussion, I truly felt that I was being listened to and that my views could benefit other women. I offered to gather views from other women on social media about the barriers they face when exercising after breast cancer.
What else have you taken part in?
I took part in a 90-minute research call about different definitions of the ‘burden of treatment’. The treatment burden refers to how long-term treatment impacts patients’ wellbeing and daily life.
I had to think aloud whilst answering a series of questions. This study helped researchers determine how to measure the treatment burden for conditions like breast cancer. At times during my treatment, the treatment burden had a huge impact on me, so it felt incredibly powerful to share my thoughts.
What does it mean to you to be a Breast Cancer Voice?
Being a Breast Cancer Voice allows me to work behind the scenes to shape the thinking and understanding around breast cancer. I’m focused on supporting the mental health and wellbeing of people with breast cancer, whether that’s through diet, exercise, or thinking about how my own anxiety levels change daily.
It’s exciting to know that I'm using my experiences, good or bad, to help improve support for the future. It gives me the chance to advocate for others.
Become a Breast Cancer Voice
Our voices use their diverse experience to improve things for others affected by breast cancer. If, like Julie, you’d like to get involved, you can join our network.