Liz's story

Today for International Women's Day (8 March) we're launching our Stories of Hope, featuring narratives from women and men who are living with secondary breast cancer. These are stories that will encourage and inspire our community, and let them know they are not alone living with this disease. Here is Liz from Surrey sharing her story.

I have been living and thriving with secondary breast cancer for over 20 years. I live with my husband Ray and have two children who are in their twenties.

My story begins in 1999, when I was diagnosed with primary breast cancer at the age of thirty nine. Four years later, I was diagnosed with metastatic breast cancer, ER & PR positive, Her2 negative and it had spread to my spine.

I am currently on four treatments and this regimen is my 11^th line of treatment.  

I have noticed many changes in diagnostic techniques and treatments in the last 20 years and also in medical personnel’s attitudes. Combining Pet with CT has made a big difference to their precision; advances in MRI scanning has greatly improved accuracy, enabling earlier treatment of smaller metastases; the scans are also faster.

Biopsy techniques have also improved and many of the new more advanced blood tests have enabled genome and molecular profiling to become much more accessible, bringing hope for some sub types such as triple negative and those with gene mutations.

 Of the four treatments I currently take, two were not available when I was first diagnosed – Denosumab and Palbociclib. Monoclonal antibodies and CDK4/6 inhibitors were not accessible; Denosumab has only been licensed for use in the NHS since 2010 and the ciclib drugs only since 2017. I could only have Fulvestrant on a named patient basis, now it is commonly available.

I am also on an immunotherapy and this is a whole new treatment area for secondary breast cancer that we are only beginning to utilise. I find this truly exciting and innovative. All these advances bring hope for better drugs with fewer side effects.

 I think it is important to think of chemotherapy as our friend, working hard to keep us going and so I have always embraced any treatment suggested to me. I have repeated several types of chemo and think it important to rechallenge previous therapies to get as much life out of them as possible.

 From the patient perspective, seeing the change in attitude of many of the hospital staff has been interesting. With the internet we now have the ability to easily research and understand our situation. Knowledgeable patients are no longer thought of as an unusual pain, but rather part of the team. Admittedly this change has been more obvious in the older doctors; in general their approach has become less supercilious and dogmatic and more inclusive of the patient’s opinions.

I hope recognising these advances will bring renewed hope, especially to those newly diagnosed. I think there is more understanding and awareness of metastatic cancers and many people are completely floored when they are first told. The rug has been pulled from under them and they have lost their balance. It takes time but they will adjust to their new normal and it is possible to live an enjoyable life, despite having metastatic cancer.

When I was first diagnosed with mets I was told I had six months to live. My kids were seven and eight. They were my reason for taking every treatment and keeping as fit as possible. I tried not to cry in daylight hours and to spend lots of quality time together; I wanted them to remember a happy mummy.

I gave myself targets to literally live for, a birthday party, a summer holiday, my last Christmas (I have had 21 last Christmases). As I kept going, the milestones started moving further ahead. I got to see them into secondary school, then into university. Now I am hoping to still be here to see them happily settle down, perhaps marry and become parents. To be a grandmother is the milestone I aim for now. It is a long way off, but who knows, with all the amazing innovations happening to prolong our lives, perhaps one day I will be a granny.

Thank you to Liz for sharing her story. If you would like to have your story shared as a Story of Hope, please get in touch: hello@make2ndscount.co.uk