The Cancer Currency campaign was created to ensure those living with metastatic breast cancer (MBC) are not just counted but valued properly. And that the incurable disease itself receives greater investment and positive policy change for everyone it touches.
But each of the women featured on our bank notes also had their own specific hopes that they wanted the campaign to achieve.
So, whether you’re reading this as a member of the public with no knowledge of MBC, someone who has encountered the disease in their life, or as someone who has the power to change policy, please read on and listen to those who have lived with MBC for years.
During my years with MBC, I haven’t received the appropriate information to make proper treatment decisions that will impact the length of my life. And while I’ve been lucky to live well despite my diagnosis, I fear that the choices I’m making are not the best, as both my oncologist and I have been relegated to a game of guess work – there simply isn’t enough support or information available on outcomes in MBC.
Currently, no health system accurately measures the number of people living with MBC. The best estimates say 10% of all cases of breast cancer are diagnosed de novo, and approximately 30% of all cases of early breast cancer will develop into metastatic. But again, this is only another guess.
If cases of MBC are not logged, how are policymakers to understand the real impact of the disease across Europe and the world. How can funding be appropriately allocated? How can lived experiences help others?
I want this to change. For the better of everyone.
We need to capture data on those living with MBC as soon as they’re diagnosed, and track experiences so others can learn from real world experiences, and make informed decisions.
We need to be counted properly.
MBC is an invisible and misunderstood disease. Even within the cancer community.
Currently, visibility campaigns are designed to promote early detection or to cover early-stage breast cancer, while the media focus is always around stories that focus on the “cured”, or “remission” stories. But as important as all of this is, we are here too. People living with MBC as a chronic illness exist, but we feel forgotten, hopeless, and ignored.
This needs to change, for all of us.
Thanks to effective new medication and combination treatments, some of us are pushing survival rates to over 10 years. That means our group keeps growing, and our special situation needs attention to help those not as fortunate as myself.
I want all those living with the disease to become visible again. And the world to become more aware about what they can do to help, or how they can stand in solidarity.
We need to be seen properly.
During my time living with MBC, I have been lucky to receive treatment from a good healthcare system in Cyprus. However I am very aware this is not the case for many other people.
What I struggle with is the lack of holistic support for me and others living with MBC – a sheer lack of time with doctors to discuss my psychological well-being, and a reluctancy from my friends and family to talk about MBC as it’s incredibly upsetting. This also extends to social media also, as I get huge responses to photos of my grandchildren, but my experience of living with MBC gets very little. Nobody wants to listen. And it leaves me feeling emotionally unsupported. While there are support groups and services out there, awareness is low. I’ve been living with breast cancer for 20 years, but it took me 19 to be connected. It shouldn’t have to take this long.
We need to be supported properly.
Four years after being diagnosed with MBC, I started experiencing issues with my eye becoming extremely uncomfortable and swollen. My local hospital diagnosed it as an eye infection – one which I treated for 18 months with no improvement – after which I was bounced from doctor to doctor and given different reasons as to why the treatments weren’t working.
During these 18 months I had to fight to be heard. I knew there was something wrong, but no one person took responsibility for my condition. That was until I was seen by a young, newly trained doctor who ran different tests and diagnosed an ocular metastasis – an extremely rare and difficult to access tumour.
My local hospital couldn’t treat it, but they didn’t refer me to another institution as they wanted to keep me as a patient. A broken system that does more harm than good.
It was Europa Donna that were able to direct me to one of 6 global specialist centers, where treatment resulted in a significant reduction in the size of the tumour – treatment that if I had waited any longer would have meant I lost my eye and possibly my life.
As someone living with MBC, we shouldn’t have to fight to be heard or treated. And we shouldn’t have to go through so much to receive the best help as soon as possible.
We need to be treated properly.
In remembrance of Simona Ahcin, this section was penned by her closest family.
People with MBC deserve better.
For Simona, it is too late to help her, but even now there are many people living with MBC across Europe and the rest of the world.
Every one of these people deserve to be seen, counted, treated, and supported.
We need to act now.
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