Hi, I’m Ellie Cooper, and I want to share my story of facing Ewing sarcoma.
With a tumour the size of a small melon, I realised that when it comes to sarcoma, size does matter. Join me in raising awareness during Sarcoma Awareness Month to ensure no one faces this rare cancer alone.
I feel incredibly proud to be working with Sarcoma UK to raise awareness of this rare cancer among young people.
Before the diagnosis, I had been experiencing kidney pain throughout 2020. Concerned about my health, I underwent blood tests, which came back negative. Ewing sarcoma.To alleviate the discomfort, I increased my fluid intake. However, towards the end of the year, I noticed a gradual decline in my weight and appetite. Initially, we attributed these changes to mental health issues and pursued cognitive-behavioural therapy (CBT). Meanwhile, I experienced sciatica in my back and leg, which I assumed was muscle soreness or stress leading up to my A-levels.
After the diagnosis, I received a COVID jab and went on a trip with friends. During that time, I noticed blood in my urine, which I initially attributed to vaccine side effects. However, a few days later, I experienced a fever and intense pain. I sought medical advice, visited a pharmacy, and made multiple calls to 111, who suggested a urinary tract infection. After a third call, I managed to secure an out-of-hours doctor’s appointment. Unaware of the severity of my condition, I was at a dance rehearsal when I was sent straight to the A&E department.
At the hospital, blood tests revealed significantly elevated levels of C-reactive protein (CRP), indicating inflammation. Furthermore, my left kidney’s function had severely deteriorated. Over the weekend, my condition worsened, with high temperatures, extreme fatigue, and vomiting. Another blood test showed a further increase in CRP levels, and an ultrasound revealed severe swelling in my kidney. The doctors suspected kidney stones and recommended a CT scan.
After the CT scan, events unfolded rapidly. A second CT scan and lung scan were performed with contrast. An emergency doctor visited me at night and outside my room I heard a medical team mention they had found something. However, they weren’t sure if it was cancer. Due to the late hour, the doctor postponed sharing the information. Later, a group of medical professionals revealed a small melon-sized tumour.
Subsequently, the hospital where I was admitted considered surgery but sought opinions from other hospitals. Treatment plans were discussed, and I underwent a biopsy. Unfortunately, a few days later, I contracted COVID, which caused delays in receiving the results. However, when the call finally came, an oncologist revealed that the biopsy indicated Ewing sarcoma. I would require 14 rounds of chemotherapy, radiation therapy, and surgery. A PICC line was recommended and inserted a few days later. Chemotherapy began the same day as the PICC line insertion.
My treatment journey consisted of 14 rounds of chemotherapy, involving five different types of chemo. Each round lasted five days and occurred every other week. The specific regime I followed was VDC/IE (Vincristine, Doxorubicin, Cyclophosphamide, followed by five days of Ifosfamide and Etoposide). During the five-day chemotherapy sessions, I carried a backpack containing the necessary fluids for my treatment.
Over the Christmas period, I relocated to Manchester to undergo 28 sessions of proton beam therapy, a specialised form of radiotherapy. After completing rounds of chemo, I underwent surgery to remove my left kidney. Blood transfusions were required between chemo sessions due to drops in my haemoglobin levels. Platelets were occasionally needed as well. Throughout this process, I received significant support for my mental health, nutrition, and overall well-being.
On June 8th, 2022, I received the incredible news that my post-surgery biopsy came back clear, and it has remained so ever since. Although there have been moments of fear, thinking that the cancer had returned, it has not. However, I continue to be monitored by a kidney specialist due to the potential kidney damage caused by Ifosfamide. I remain hopeful for improved kidney function. Recently, I have experienced increased fatigue and ongoing nausea.
Despite the challenges, I feel incredibly proud to be working with Sarcoma UK to raise awareness of this rare cancer among young people. Sarcoma UK plays a crucial role in raising awareness, funding vital research for improved treatments, and providing support to patients and their loved ones through the Sarcoma UK Support Line.
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.
