Robin's Story: Creating a charity to support triple-negative breast cancer patients

In 2017, Robin Woolcock faced the devastating loss of his wife, Ruth, to triple negative breast cancer (TNBC). Their journey together was an emotional experience, spanning eight years filled with hospital visits, treatments, operations, scans, laughs, and tears. After witnessing Ruth's bravery and resilience, Robin was inspired to make a difference for others living with TNBC.

Frustrated by the unfairness of TNBC's more aggressive course compared with other forms of breast cancer, Robin resolved to do something for the estimated 40,000 people with TNBC in the UK¹. Drawing from his first-hand experience as a caregiver, he embarked on a journey to establish a charity dedicated to triple negative breast cancer, providing both advocacy and information.

Inspired by the pioneering work of the TNBC foundation in New Jersey, USA, which is led by the remarkable Hayley Dinnerman, Robin was motivated to do the same in the UK. Additionally, a chance encounter with Chris Twelves, Professor of Clinical Cancer Pharmacology and Oncology at the University of Leeds and breast oncologist, provided invaluable expertise to enable the charity to develop.

In 2021, Robin's vision materialized as the charity was officially registered, with its inaugural website serving as a lockdown project. The following years marked significant milestones, from insightful roundtable meetings to hear directly from patients, to empowering TNBC voices to drive impactful campaigns like "I count" to raise awareness and share resources. 

Looking ahead, Robin is planning continued growth and impact for the charity with further plans to enhance the website (UK Charity For TNBC), create a nursing foundation to fund further education, and appoint 150 specialist nurses, to be frontline advocates and mentors, so-called "TNBC champions". 

Ultimately, Robin's long-term aspiration is for every individual in the UK facing a TNBC diagnosis to find, solace, support and resources through the charity. His vision is that the charity will become the voice and ally for all matters concerning TNBC. 

More about the charity 

'What about us?' 

What Robin discovered was a lack of specific support and resources for people with TNBC. There are many great breast cancer charities in the UK covering all aspects from prevention to after care, and for multiple types of breast cancer, but with less focus on the specific needs of TNBC patients.  

"In patient advocacy groups, people with TNBC often felt 'invisible' due to all the publicity around other types of breast cancer. An often heard complaint was 'What about us?'

The charity is now establishing itself as the 'voice' of TNBC to raise awareness of the needs of these patients and improve their care. The charity is driving advocacy with many organisations in the UK including: NICE, Institute of Cancer Research, Royal College of Nursing, Association of Breast Surgeons, and many others. TNBC and Robin were also invited to visit the House of Parliament to meet MPs and Lords with particular interests in breast cancer care. 

Why is TNBC difficult to treat? 

Survival rates for people with breast cancer have increased significantly over the last 20 years^2,3. These survival trends are likely due to a combination of treatment advances for 3 out of the 4 main types of breast cancer² that have medicines that target the proteins on the surface of the breast cells. These proteins are not in TNBC, and therefore these drugs do not work, and so the cancer is called 'triple negative'. 

However, TNBC can be treated with chemotherapy and the landscape is changing for people with TNBC as new treatments such as medicines that work through the immune system become available. 

How can we make it less negative? 

People with triple negative breast cancer tell us that they feel that the narrative around TNBC is often one of ‘doom and gloom’, even the name is negative! But if diagnosed early and treated quickly, people with TNBC can often become cancer free. However, because there are fewer newer medicines, TNBC is often described as more ‘aggressive’ because it is more likely to return and spread. While advanced breast cancers cannot be cured, this does not mean that nothing can be done, as it can be treated and controlled.

The charity is working to ensure that patients receive a ‘balanced’ view of their treatment options and are given hope.

How can we find reliable information? 

So much literature and information on the internet covers every type of breast cancer, and it is often difficult for people with TNBC to understand what applies to them, and, just as importantly, what does not. There is also a lot of misleading information from unreliable sources which can be particularly distressing.

For this reason, the charity has developed the website www.ukcharityfortnbc.org which aims to focus on TNBC while providing comprehensive information and be easy to understand. The reader can find out as much or as little as they need. The charity also provides downloadable and printable leaflets for healthcare professionals to use with their patients. 

A 'community' forum is also now available via the website for people to connect and share knowledge and experience with others ‘just like them’.