Meet Maddie

Hi, I’m Maddie Cowey, and I want to share my story of facing alveolar soft part sarcoma.

I was diagnosed with sarcoma in January 2016. When it comes to sarcoma, size does matter and my journey involved confronting a tumour the size of a golf ball. This experience has motivated me to support Sarcoma Awareness Month and increase knowledge while highlighting the importance of early diagnosis for this rare form of cancer.

I had never heard of sarcoma before my diagnosis at 18. I didn’t know cancer could grow on literally any part of your body, let alone at such a young age.

There has not been much cancer in my family either so everything was incredibly new and scary to me, and to all of us. I had to do a lot of personal research and finding out that my sarcoma is ‘ultra-rare’ made finding information even harder.

Having just started university, I was incredibly naïve, and at the same time was going through my first heartbreak. It felt like my world was falling apart. In many ways it was, and it did. My view of life suddenly changed – I was faced with my own mortality and started questioning everything I knew. It was a very lonely place.

A small lump on my left shoulder was the only indication something was wrong. Initially, I wanted it removed for cosmetic reasons. However, it turned out to be sarcoma, specifically alveolar soft part sarcoma (ASPS). It took over five months to receive an accurate diagnosis, which is unfortunately common in sarcoma cases.

Immediately following my diagnosis, I was informed of what my treatment would be. Fortunately, I had already been referred to a sarcoma specialist centre, so the team knew what they were doing. I was informed that chemotherapy is not effective on my type of sarcoma, but that my tumour would be removed (hopefully with good ‘margins’). If there were any cancer cells left over, I would potentially have radiotherapy and they would check that the cancer hadn’t spread. If they managed to remove all the cancer, I was told I would have regular scans for the next 10 years to ensure the cancer didn’t return. I currently take a drug called ‘Cediranib’ on compassionate grounds, which targets a protein in my body to inhibit the growth of cancer cells.

Living with cancer has guided me to be and do what I love today – becoming an ambassador and fundraising for Sarcoma UK, volunteering with the cancer/hair loss charity, Wigs for Heroes, working full-time at a local Disabled Person’s Organisation, and sharing my story on social media and on my blog, Maddie’s Cancer Tales.

I always tell people to get to know their ‘normal’ and get any unusual symptoms checked out and that it is important to get any lumps checked out, wherever they are on your body! The earlier the diagnosis, the better the prognosis. I really enjoy fundraising and volunteering for Sarcoma UK, as well as being an ambassador for the charity. I am very lucky with the way life is at the moment – I work full-time for another charity, and I spend my free time exploring, travelling, eating good food and going to concerts. I am more than my cancer diagnosis, but unfortunately, I can never escape it.

Since my diagnosis, Sarcoma Awareness Month in July has been an incredibly important month for me. I envisage a future where nobody must die of sarcoma and July is the time to get people talking and get people donating. More funds equal more research which equals more hope for everyone impacted by sarcoma.

If you would like to talk to someone, you can contact our Support Line on 0808 801 0401, supportline@sarcoma.org.uk or text 07860 058830

Learn more about sarcoma Sarcoma Awareness Month 2023