People with breast cancer hold the key to innovating care

A powerful testimonial of the impact of breast cancer and how continued innovation, with clinicians and people with breast cancer working together, is the key to truly delivering on personalised care.

An interview with Sandrine Lavallé, breast cancer patient representative on the Roche Global Breast Cancer Council, and Steve Tuplin, Global Franchise Head, Breast and Gynaecological Cancers (Roche Pharma)

Sandrine: I was diagnosed with breast cancer in April 2017 at the age of 46. 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. It is a living nightmare really. Due to the nature of my cancer, I was recommended to have surgery, chemotherapy, and radiotherapy. The treatments themselves propelled me into early menopause so the changes only continued – my skin, my hair, my face, there was sweating, fatigue and pain. I didn’t recognise myself.

Steve: Breast cancer at any age is devastating but it strikes me that you were diagnosed at a very pivotal stage of your life, Sandrine. At Roche, we talk about personalising therapy by tailoring breast cancer treatment to the disease, but we never lose sight of also tailoring treatment and care to a person’s life stage – and most breast cancer diagnoses occur when women and men particularly have dependents or people to care for.

Sandrine: Absolutely, the menopause was an unexpected, debilitating side effect of treatment for me. I had a family, a son aged 16 at the time, but there are people diagnosed at the age of 30 who have young children or may not have started a family yet. At any stage you are faced with challenges, but you have to react, to survive and find your way.

Patient preferences on treatment

Sandrine: When we talk of patient preference guiding treatment decisions, in my case this was very true, though I’m not sure how common this is in general. As I had worked as a health writer, I knew about personalised medicine. When I was diagnosed, I asked my oncologist directly about genomic testing of my cancer. I wasn’t satisfied with the response, so I sought a second opinion. It’s something I have always recommended to my readers – ask the right questions. I prefer to be active in my life instead of being passive. I try to explain it this way, if my car was not working properly and the garage quoted me €2,000 to repair it, I would say I am going to take it to someone else.

My second medical opinion showed that there were other treatment options. This allowed me to have a conversation with my doctor and see which treatment was best for me. Of course, every case is different. So, my role now is to inform newly diagnosed people that a second opinion is very valuable – it can confirm a diagnosis or give you an opportunity to discuss other treatment options with your doctor.

Steve: It’s a sobering point, Sandrine. We have talked about disparities in breast cancer during Breast Cancer Awareness Month (BCAM) and as part of the post-COVID-19 narrative of health equity across the world. Indeed, all of us, people with breast cancer, physicians, society and Roche, are committed to the vision that no person dies from breast cancer, and improving health equity is a critical element to achieve this. At Roche, we are partnering for solutions end to end across all parts of our enterprise, from research and development to commercialisation. Fundamentally, to achieve this vision that is so important for the individuals affected and society, innovative medicines need to reach the majority of people with breast cancer, not the minority.

The doctor patient partnership

Sandrine: Absolutely Steve, we cannot make the impact we need if people with breast cancer don’t have access to the treatments that are right for them, and they play an important part in deciding this, alongside the science. When I speak of the informed patient, I am not proposing by any means that any patient has as much knowledge as their clinician; we cannot compare the two. But in my experience, there is a culture of following protocols rather than being guided by the person in front of you. Furthermore, each member of the clinical team is the expert in their own field, whether that be the surgeon, radiologist or oncologist but they are not the expert on you. For me it’s moving away from this siloed thinking to cognitive diversity – if oncologists open their minds to really listen to the patient perspective and integrate it into care, we will really start to innovate together.

Steve: For sure, the patient perspective and partnership, at all levels of shaping treatment and care, is ultimately so important. One of my colleagues, Maura Dickler,of this recently as part of BCAM. One thing she values at Roche is learning from clinical trials and from the experiences of people with breast cancer and going back to the laboratory bench to iterate and innovate further. This idea of clinicians and researchers working together is well established but partnerships between people with breast cancer and researchers and clinicians is a winning formula for delivering the personalised care of the future.

Sandrine: Exactly, it’s a holistic system that should take into account all perspectives, including those of people with breast cancer. This is what the European Patients’ Academy on Therapeutic Innovation (EUPATI) seeks to do. I’m a fellow and board member of this organisation, which aims to empower people with breast cancer to be confident and translate their own experiences to support research and further innovation. Similarly, on the Roche Global Breast Cancer Council*, we are from different cultures and countries, but speak the same language when it comes to our experiences.

Thoughts on BCAM

Steve: For me, it’s the point Sandrine just mentioned – BCAM is a moment to reflect on how we can tap into that patient power and richness of data and experience. In my field of work, it feels like BCAM is held every day, and my commitment is to enable teams to develop better treatments that reach more people. At the end of the day, our vision is for no person to die from breast cancer. I fully recognise that we cannot do this without embedding the unique patient perspective into everything we do, every single day. For example by considering not only innovative treatment advances, but also how and, indeed, where people with breast cancer choose to receive such treatments.

Sandrine: BCAM is very important to support women and men - let us not forget men also have breast cancer - to listen to their bodies and go straight to their doctor if they notice any changes. Mammograms are often only available after the age of 50 and many people, like me, are diagnosed before then. Also, mental health is an important clinical marker, in my opinion, to be considered alongside diet, exercise, alcohol consumption and smoking. Breast cancer needs to be addressed holistically and BCAM gives us the opportunity to bring discussions to the forefront that delve into the patient experience. Work needs to be done to consider all aspects of health and wellbeing that are connected to the disease throughout a person’s life before, during and after its initial impact. That way, more positive change can happen, and treatment can evolve.

*The Roche Global Breast Cancer Council is a group of patient group leaders, patients, nurses, and doctors who represent diverse organisations around the world and have a broad range of knowledge and expertise relating to breast cancer. It was set up as a forum to share this knowledge, provide expert advice, find ways to meet people’s needs, and listen to the breast cancer community worldwide. Supported by and together with Roche, we aim to transform healthcare in the interest of people with breast cancer.

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