Name: Jo Taylor
Diagnosis: Primary diagnosis 2007 HER2+ right breast – 2014 diagnosed with MBC in neck nodes and oligomets in the sternum, since then mets in the humerus, left axilla clearance, brain met in the cerebellum
Age at Diagnosis: 42
Hi, I’m Jo and live in Saddleworth with my husband of 30 years Jeff and our 2 teenagers 17 and 15.
I was diagnosed with primary breast cancer in Feb 2007 at the age of 38 whilst on maternity leave with my daughter. I had a right-side mastectomy and reconstruction (LD Flap) 6 months of chemo, 20 sessions of radiotherapy, treatment complete September 2007 but with an additional year of Herceptin. 7 yrs later – a year after launching After Breast Cancer Diagnosis, a website and support for patients online and providing peer support, I found a lump in my left neck and I was rediagnosed with MBC in the neck lymph nodes and 2 small oligomets in my sternum.
5 years ago I launched the METUPUK advocacy, campaigning, and activism group for MBC patients because I could see that no one was really shouting about the problems we have. I created #BusyLivingWithMets to show that patients were actually living with the disease but we need a huge change with truly personalized care. I regularly share my story, speak at events and get involved in steering committees, public and patient involvement, and research for MBC.
As a patient, I have had over 14 surgeries due to breast cancer mets with a neck resection, most of my sternum removed 4 years ago. Last year at the height of the pandemic I was diagnosed with a brain met and had targeted SRS and also had an additional left axilla clearance due to more lymph nodes with mets. But I’m still on 1st line therapy with perjeta and Herceptin. I also have denosumab and prostap injections. I still love to use physical activity daily to support my physical and mental health and to help with the side effects of treatment.
As an advocate, I am very active on social media and this has helped me connect with many patients and clinicians worldwide who recognize and respect the work I do. I have successfully created an infographic for patients to recognise red flag symptoms of MBC which is now signposted by NHS England, a book about patient stories with supportive information, and organize weekend motivational exercise retreats for breast cancer patients.
The infographics are now being translated into multiple languages supported by large pharmaceutical and I’m glad I didn’t listen to charities and professionals who told me that patients didn’t want to hear about red flags because it was “too scary”.
Why you wanted to be involved with the MetUpUK campaign: I am passionate about creating change for patients especially those with MBC. The only way change will happen is for us to demand change together as a group. We cannot continue with the same outcomes and with women dying at the same rate. I’m sick of being ignored and invisible by the people who should be supporting us! I cannot accept the inevitable outcome and become a statistic of the 31 that die every day. It’s urgent that we are heard and the lack of action and accountability needs to be addressed. We demand change.