The breast cancer voices that have shaped me

As someone who has worked in healthcare for over two decades, I often reflect on where my journey began and how my work fulfills my purpose as an individual. The theme for this year’s ASCO Annual Meeting – The Art and Science of Cancer Care: From Comfort to Cure – resonates with me deeply and instantly reminds me of the experiences and wisdom of all the powerful women I have had the privilege to meet as part of my role as a Global Patient Partnership Leader at Roche in #breastcancer.

I have had the pleasure of meeting the most incredible and inspiring people from the breast cancer community, of all ages, genders and backgrounds. I have listened to and learned from them as they have shared their stories of despair, hardship, resilience, hope, and collective altruism for future generations. They have taught me that every person’s cancer is different and there is no ‘typical’ way to experience this disease (or set of diseases, which is the more accurate way to describe cancer today). Each person is unique – from how they respond to their diagnosis, to the role they play in their care, the outcomes they hope to get and how they view their future. Yet, despite these differences, there is one thing that unites all the people I have spoken with, and that is the determination to live their best life with breast cancer. This is something that is central to my work at Roche – listening to people living with breast cancer and putting their experiences and needs at the heart of our work to be able to support them in a way that is genuinely meaningful. 

What does it mean to innovate in a meaningful way?

Breast cancer treatments today are, thankfully, vastly different from those that were prescribed more than 30 years ago. Today, the approach is more targeted and also takes into account the person's quality of life (QoL), which was often compromised by the approach 30 years ago. Sandrine, a member of the Roche Global Breast Cancer Council (GBCC) and European Patients Academy on Therapeutic Innovation (EUPATI) fellow, said to me, “when you are diagnosed, your life completely changes from one day to the next. You have to reinvent your life. Your daily routine stops, how you work, how you act, and you have no idea if the disease has spread”. Sandrine highlights what many people experience, that the symptoms of breast cancer and the side effects of treatments can disrupt even the most ordinary activities most of us take for granted. Understanding this reality and prioritizing the development of treatments and other solutions that help people beat their cancer, without compromising their QoL, is how we will make a meaningful impact. At #ASCO24 we are presenting insights related to health-related QoL in breast cancer. One of the studies we are presenting aimed to assist researchers in adopting a patient-centric approach when gathering patient-reported outcomes. We collaborated with the Roche Global Breast Cancer Council (GBCC) to design this study, and also included three GBCC representatives on the Steering Committee to ensure the outcomes would be as meaningful as possible.

Improving QoL for the long-term

“What’s interesting, and what became apparent early on in our Roche GBCC discussions, was that no matter where in the world we were from, we’ve all had very similar experiences in relation to long-term side effects and survivorship, in that this ‘future-piece’ was pretty much mostly overlooked by our medical professionals.” - Dana, member of the Roche GBCC and founder of an inclusive lingerie company for people living with breast cancer.

Long-term side effects of breast cancer and treatment are sadly often overlooked, as the complexity makes it less of a priority for healthcare systems – a fact highlighted earlier this year in the The Lancet Breast Cancer Commission report. However, long-term side effects can have a serious detrimental impact on physical and emotional wellbeing, sometimes for many years or even decades to come. This is something that was highlighted to me recently when working with the GBCC on a Patient Benefit & Societal Impact (PBSI) Framework, designed to help us understand what matters most to people living with breast cancer. 

Fertility is one of these long-term side effects. Marie, a young woman diagnosed with breast cancer, told us that a doctor said to her, “do you want me to save your life, or do you want to be a mother?”. Stunned, Marie thought to herself, “can’t I have both?”.  At the time, Marie was engaged to be married and starting a family was top of mind. It hadn’t occurred to her that starting treatment for her breast cancer could stand in the way of her future fertility and no-one had mentioned it before. At Roche, our aim is to improve treatment outcomes and enhance patients' QoL with new medications that have minimal/ manageable side effects and are administered in a convenient form. Patient perspectives like this one help us identify where the – often hidden – needs are, so we can support the patient community and healthcare professionals in improving the care experience for the long-term. 

Medicines for patients, developed with patients

Meeting all the inspiring people has helped me personally grow and I never cease to be amazed at the strength, resilience and positivity of people living with breast cancer, even in the face of such adversity. 

I’m thankful to Dana, Marie, and Sandrine and the countless other individuals I speak with for bravely sharing their stories and standing up for the wider community. Understanding their needs – be that related to treatment and disease outcomes, QoL or education and empowerment - is helping Roche develop treatments and support that is as meaningful as it can be, and we hope helping more people live their best life with breast cancer.  

Learn more about what Roche is doing in the area of meaningful innovation in oncology from my colleague Charles Fuchs

Learn more about Marie’s story in this article and about onco-fertility in breast cancer in this podcast with Matteo Lambertini, Assistant professor at the University of Genova and Consultant in Medical Oncology.