Mandy's story

We’re asking our community to share their story for World Cancer Day (4 Feb) and highlight the signs and symptoms that led to their diagnosis. Mandy (53) from Pembrokeshire in South-West Wales lives with her husband Marc and two sons, Luke (22) and Daniel (15) and had concerns after finding a lump. We're thankful to Mandy for sharing her story.

In February 2021 I was play-fighting with my energetic youngest son Daniel and he accidentally elbowed me in my boob. It was instantly very painful and tender. Almost immediately there was swelling, and a few days later it was still very tender and I could still feel a lump. As someone who regularly checked their breasts, I knew this was unusual for me so I booked an appointment with the GP. 

My doctor confirmed that she could feel a lump and thought it was an enlarged lymph node. She referred me to the Breast Care Clinic and I was seen 10 days later. I was on my own due to Covid 19 restrictions and had a mammogram and an ultrasound. They discovered three lumps buried deep in my breast and after nine biopsies, I was told I had cancer. He explained that my breast tissue was dense and that without the elbow to the breast by my son, it was unlikely that the lumps would have been discovered until my first mammogram a couple of years later. Being on my own was tough, but I still wasn’t particularly worried. 

I realise in hindsight that I had been suffering with other symptoms of breast cancer: fatigue, pain, and feeling unwell, but as someone who has a pre-existing condition of  fibromyalgia, slipped discs, degenerative diseases and arthritis which has the same symptoms, I had not considered it to be anything else. Within a few days, I travelled to Swansea for a PET scan where they discovered that the cancer had spread to my spine.

This is when all my world changed. I was diagnosed with Oligometastatic De Novo breast cancer. Also known as metastatic/ secondary/ stage 4/ incurable breast cancer. I had NO idea you could go straight to stage 4. Nearly four years later I continue to be stable. I am on my first line of treatment and am very grateful that my treatment is keeping the pesky cancer cells at bay. My cancer subtype is triple positive, so luckily I have a number of treatment options. At the moment I have treatment every three weeks as well as a cocktail of medication each day. I was offered a mastectomy and I have had chemo and 25 cycles of radiotherapy to the spine and chest area. Due to side effects - some life-threatening - my treatments have needed to be halted and tweaked over time.

My diagnosis has massively affected my life. Being on treatment for four years has taken its toll. Physically, from surgery and harsh medicines with horrible side effects such as joint pain, weight gain, extreme fatigue, loss of hair to name but a few! Emotionally, living with anxiety, fear and a feeling of loss. Telling my family, especially my two boys, was heart-breaking and the hardest thing I have ever had to do. 

Having to retire from a job that I really enjoyed and was a big part of my identity was also really hard. I worked for 27 years in the NHS as a senior behavioural practitioner, working with adults with learning disabilities with severe challenging behaviour. 

The constant medical health appointments that were sometimes a long way from where I lived is difficult too. It can feel never-ending and isolating. There is also a financial impact with the cost of treatments, travel expenses, time off work and a loss of income.

I discovered that I had a need for information as I had no knowledge of breast cancer, let alone metastatic breast cancer. Like everyone I went straight to Google!! (not recommended) and freaked myself out by reading outdated data and statistics. There was so little information about metastatic breast cancer, so I looked on Facebook for support. This is when I found Make 2nds Count and joined the community support group. I found a tribe of people who knew just what I was going through. 

I went on a 2nds Together Retreat and it really was the best thing to have happened to me. I was dealing with lots of side effects and working out how to ‘live’ with secondary breast cancer. Without exaggeration, it was life changing. For the first time since my diagnosis I felt supported, less alone and less fearful of the future. These women showed me that you can live a good life with this disease. It gave me hope at a time when I felt hopeless. I learned that life doesn’t have to stop because of the diagnosis. 

I have also learnt a lot through the website where there are trusted sources of information and experiences of treatments, medicines and living with the disease. I became an ambassador for the charity and am in the process of starting a local Tea & Chat group and have helped organise the first Welsh retreat. 

Living with secondary breast cancer is exactly that - living! It might mean it’s done with adjustments, but as I am learning, you can live well with metastatic breast cancer. It’s an emotional rollercoaster with lots of complex emotions such as grief, fear, anxiety and confusion. It’s scary and exhausting and unpredictable,  but actually, there are positives too. You learn to become resilient and look to focus on the positive aspects of your life. Enjoying the smallest of moments that bring you joy becomes more important and meaningful. 

I am still me and although this diagnosis has changed my life, this has only been a small part of my life. It doesn’t define me. I am all the things I was before cancer. Try not to let it overwhelm you.