Treatment decisions should be based on truly informed consent

Tell us about yourself

I'm originally from Germany but have been living abroad for over 20 years, across the UK, the UAE, Portugal, the US and Ireland. I've always been passionate about health and communication, long before cancer entered the picture. I love running, cycling, and spending time outdoors, and healthy living has always been part of my lifestyle.

As a communications expert, I'm interested in how people and organisations talk to each other, and to patients. Through Breast Cancer Now and Working With Cancer, I found my calling in patient advocacy.

What was your breast cancer experience, and what support did you receive at this time?

I was diagnosed in October 2021, with stage one multifocal invasive ductal and lobular carcinoma. I had found a lump two years earlier, but alternative practitioners had conditioned me to fear mammograms, so I chose thermography screening instead, and a vague recommendation from a doctor meant I didn't initially follow up. That delay cost me two years. After diagnosis, I briefly doubled down on alternative treatments before I handed myself over to conventional medicine to stabilise my condition.

Moving around while navigating care made everything more complex. I only found out I carry BRCA2 because I moved to Portugal, where genetic testing was offered more widely. While living abroad, I kept consulting with my original UK oncologist wherever I could. I worked with a therapist, and leaned heavily on patient communities.

Once I moved back to the UK, I found real, structured support. I had already used Someone Like Me before my surgery, and I also attended the Moving Forward course. As an expat, that kind of formal charity support becomes genuinely invaluable, especially once you've lived without it.

How are you now?

"Now" rarely means simply "cancer-free and done". I've had 3 metastasis scares since finishing active treatment, which taught me it's just part of living with this disease. As a BRCA2 carrier, my surveillance schedule is also more intense, with ongoing monitoring for breast, ovarian and skin cancer.

This month marks 5 years post-diagnosis, and I feel fortunate that I'm doing well and that the treatment choices I made are working for me. I'm aware that recurrence remains a real possibility for around 30% of women. I try to focus on what I can control: managing stress, eating well, moving my body, nervous system regulation, building community, and channelling a lot of that energy into patient advocacy.

Why did you decide to write a book about breast cancer?

I spent 20 years helping some of the world's largest organisations communicate effectively, getting the right information to the right people at the right time. Then I became a cancer patient and discovered that patients are routinely not given the information they need about the benefits and side effects of treatments, or about how to weigh those trade-offs against their own quality of life and priorities.

I was also immersed in alternative medicine, believing lifestyle and natural approaches could protect me from disease. Then I was diagnosed anyway.

I kept seeing the same gap in every stage of my treatment pathway and long-term recovery. Each time, I had to find the information I needed for myself. Because I read a lot about cancer before my diagnosis, I arrived with more information than patients normally have, and could make informed choices about my treatment together with my doctors.

Patients have more agency than they think, and I wrote this book for every woman, so that whatever she decides is genuinely her own, based on truly informed consent.

There were also plenty of things I didn't get right along the way, and the book is honest about those too. The hard lessons matter just as much as what went well.

How can people navigate finding reliable health information?

Patients today aren't short of voices telling them what to do. And increasingly, what reaches them isn't clinical information at all.

In my book, I ask why patients should need to become researchers just to make an informed treatment decision, chase down studies to help with treatment symptom management, or become lawyers to educate our employers about workplace rights. Most women get none of that preparation. They're handed a diagnosis, in shock, and expected to make life-altering decisions with almost nothing to go on.

What patients need is the confidence to ask, what's the actual number behind this claim, and what does this person have to gain from me believing it?

What would you say to anyone who's also looking to raise awareness about breast cancer?

Get involved wherever interests you, be it influencing policy, clinical trials and research, or patient support. Programmes like the Alamo Breast Cancer Foundation, Breast Cancer Voices, or Working with Cancer are great routes to explore. And above all, find your community. Sharing your story, in whatever form that takes, can be a genuinely healing exercise.