Caitriona Plunkett, a PhD researcher at Manchester Metropolitan University, is investigating a breast cancer awareness intervention for young women with Neurofibromatosis type 1 (NF1) which has been funded by the Childhood Tumour Trust. She highlights the shock of a young breast cancer diagnosis and its impact on her family, emphasising the importance of early detection.

Caitriona’s research reveals that NF1 patients often feel unheard and undervalued by healthcare professionals, leading to reliance on potentially misleading information so she advocates for empowered patient-doctor partnerships, urging NF1 patients to actively engage in their healthcare, ask questions, and seek clarification to ensure they are central to their treatment process.

Caitriona was quite shocked to be diagnosed with breast cancer, particularly at such a young age. She thinks she was very guilty at the time of considering, “Well, breast cancer, that’s not going to affect me. I’m too young for that,” and so that was a real eye-opener. It didn’t just affect her, it affected her little family as well – her husband and her kids who were quite small at the time, only nine and six years old, having to learn about their mum’s diagnosis and what was happening. It also helped steer her research.

“Knowing that I had a good prognosis from catching breast cancer early, I wanted to help raise that awareness in some way, and knowing and learning about that increased risk at a younger age for women with NF1, felt like a right place to begin.”

As part of her PHD Caitriona created this video to help raise awareness. In this informative video, the character Bea shares her personal journey with Neurofibromatosis Type 1 (NF1) and emphasizes the importance of breast health for women with this genetic condition. NF1 can increase the risk of developing neurofibromas and café-au-lait spots, as well as a significantly higher chance of breast cancer for women under 50. It provides practical advice on how to perform regular breast checks, what changes to look for, and the importance of understanding what’s normal for your body.

The video encourages viewers to choose a comfortable time and place for self-exams, set reminders, and consult healthcare professionals if any changes are detected. With a focus on empowerment and early detection, it highlights the importance of annual breast screenings starting at age 40 for women with NF1. Join her in learning how to prioritise your health with confidence and knowledge.

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We are delighted to work with Childhood Tumour Trust to raise awareness of the risk of breast cancer in people with NF1 and the importance of early breast screening. People with NF1 are at increased risk of developing breast cancer with those under the age of 50 having an up to 5 fold increased risk over general population. It is vital that people with NF1 understand their risk, know how to check their breasts, know what screening options are available and can advocate for themselves with healthcare professionals to ensure access to early screening which may fall outside of NHS normal screening age guidelines. You can view the entire campaign at https://breastcancer.childhoodtumourtrust.org.uk and also download the below factsheets.

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