Working with Lobular patients, patient advocate Jo Taylor from abcdiagnosis and health psychologists at De Montfort University (DMU), we’ve created a series of four downloadable ‘digital postcards’ to help you when having conversations with your medical team. The four digital postcards focus on primary diagnosis and are for (1) at initial diagnosis, (2) during initial treatment such as surgery, (3) helping to make decisions about chemotherapy, radiotherapy or hormone therapy after surgery and (4) being aware of the potential local or secondary recurrence.
Each digital postcard provides you with some useful information and then suggested questions about things you might want to ask.
You can download them to your phone or a tablet, or print them off. Importantly, they can be accessed individually so you can decide when you are ready to consider the next decision or if you want to look at them all in one go.
Dr Helen Coulthard, a health psychologist who was diagnosed with Lobular Breast Cancer in 2019 and helped to set up LBCUK, has worked with fellow DMU researchers Professor Iain Williamson and Dr Kerry Quincey, to create the resources.
“We see these postcards as aids for helping when talking with your surgeon, or oncologist or breast care nurse,” says Helen. “These digital postcards can be a helping hand during appointments. At such a worrying time, your mind can go blank and then there can be confusion about what to ask or decisions to make.
“The information is designed to ensure you have a checklist ready and are asking the best questions for that stage of treatment.”
We ran three focus groups, represented by women from around the country who had all had a Lobular diagnosis, to help create the issues and key questions that patients might want to ask.
Jo Taylor from abc diagnosis, also helped to design the postcard focusing on recurrence.
We want to say a huge thank you to all of the women involved in helping to shape the information, the team at DMU and our Scientific and Medical Advisory Group for their overview of the content.
You can download the postcards from our website at the Information & Resources page.
