Hi, I’m Kay Wierba, and I want to share my story of facing liposarcoma.
I was diagnosed with sarcoma in 2018. My journey involved a tumour that grew somewhere between the size of a mango and a cantaloupe. However, when it comes to sarcoma, size does matter. For Sarcoma Awareness Month this July, I want to raise awareness and improve research into this rare form of cancer while highlighting the importance of early detection.
Before my experience, I had limited knowledge of sarcoma, a form of cancer.
Despite knowing (from my experience working in the NHS) that a protocol stating that suspected sarcoma cases should be referred to specialised sarcoma sites, my initial hospital disregarded this multiple times.
Before my diagnosis, I experienced signs of anaemia and was prescribed iron pills. Unfortunately, the iron pills worsened my digestive system, and I ended up in the emergency department. However, the junior doctor only noted the constipation and overlooked the emerging lump. As the lump grew, it became increasingly uncomfortable, hardened, and bulged to the touch.
My diagnosis journey was challenging. After being referred as a ‘2-week wait’ for suspected ovarian cancer, tests revealed my uterus and ovaries were healthy. I was then referred to the colorectal department for a CT scan, as it was believed that the issue might be related to my bowels.
During the operation in June, the lump was successfully removed, but there was no mention of cancer or the removal of a portion of my bowel. Later, I confirmed my suspicions of a cancer diagnosis and Liposarcoma with a consultant. I requested my medical notes and discovered that I had been misdiagnosed. Had I been accurately referred, surgery alone could have sufficed.
Following the correct diagnosis, I received treatment at a specialised sarcoma site, undergoing intense radiotherapy for five and a half weeks. The treatment had side effects that affected my body and caused early-onset menopause. Sarcoma had a significant impact on my life, causing unemployment, limited social interactions, restricted mobility, and mental health challenges. Despite the difficulties, I am now in good health and have reached the five-year milestone of being clear of cancer.
Through my journey, I realised the lack of awareness and understanding of sarcoma among clinicians and the public (I could count on one hand the number of people I know who have heard of it) and I believe it is essential to bring about immediate change. There should be a comprehensive campaign aimed at raising awareness and providing helpful information for both clinicians and the public. This campaign should include easily understandable slogans and specific resources tailored to different target audiences.
My experience with sarcoma has inspired me to advocate for improved awareness and understanding. I hope to bring about change and support others facing this rare form of cancer.
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
What is Sarcoma?
We shine a spotlight on sarcoma, looking at what it is, its causes, common symptoms, and available treatments. You will also find links here to further information and how to reach out for support if you or someone you know is affected by sarcoma.
What is Sarcoma?
We shine a spotlight on sarcoma, looking at what it is, its causes, common symptoms, and available treatments. You will also find links here to further information and how to reach out for support if you or someone you know is affected by sarcoma.
