Sarcoma awareness month
JULY IS SARCOMA AWARENESS MONTH.
Awareness of Sarcoma cancer in the UK is very low and therefore it is often diagnosed too late as people are not aware of the symptoms, or are sadly misdiagnosed. More needs to be done to raise awareness of this cancer, and charities such as Bone Cancer Research Trust work hard on pioneering research that saves lives and improves outcomes for people with primary bone cancer. Sarcomas are cancers that can affect any part of the body, on the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues. Sarcoma UK fund world-class science to understand sarcoma better, improve treatments, and ultimately make a difference to people’s lives.
There are two main types of sarcoma, soft tissue sarcoma and bone sarcoma. And there are around 100 different subtypes of sarcoma. So far no one knows why sarcomas happen and therefore more research needs to be done to understand how these cancers develop and how best to diagnose and treat them.
Sarcoma is rare, making up less than 2% of all cancers diagnosed in the UK each year. There are only 15 people diagnosed with sarcoma every day in the UK. That’s about 5,300 people a year. And I am one of those 5,300 people. I am one of the 15 people who were given the devastating news that day. My life was changed in an instant. But thankfully I am here to share my story. I am a Sarcoma Survivor.
In 2019 I was suffering from severe bloating, heavy bleeding and frequent urination. After being seen by a Doctor I was diagnosed with a degenerated fibroid and was reassured that it was not cancer. Three months later I had surgery to have it removed. It was only when the sample was sent for a biopsy that it was diagnosed as sarcoma cancer. It would be a further two week wait to find out that it was in fact a very rare case. I was officially diagnosed with Ewing's Sarcoma of the uterus. An extremely rare and aggressive cancer, with less than 50 cases reported in medical literature worldwide. Nothing can prepare you for hearing those words. It is earth shattering. But somehow you find the strength within you to fight, and so I started Chemotherapy just two weeks later. Prior to my diagnosis we had booked and paid for our wedding, unsure of what the future held, we cancelled it and quickly married in a beautiful ceremony two days before I sat in the chemo chair for the very first time.
Treatment for Ewing’s Sarcoma is intense and I completed 11/14 rounds of planned Chemotherapy, had a full hysterectomy and completed 28 sessions of radiotherapy. Just one round of the chemotherapy drug and I had lost all of my hair, and experienced intense mouth ulcers and neutropenic sepsis, resulting in my first of many hospital admissions. During my treatment I fought neutropenic sepsis four times, had many blood transfusions, and suffered with a plethora of debilitating side effects, but nothing was as painful as having to spend weeks at a time away from my young daughter. This little person was watching me, and I just knew I had to keep up my fight. I tried to put a positive spin on an incredibly tough situation and so it became my thing that I would make every chemo session into a “day out” and I’d put on a different wig or a new colourful turban, I would often buy a new dress, and do my make up. It was my way of getting through something that I had no control over, and it worked. I didn’t dread the treatment trips as much as I thought I would. I made friends in the Chemo suite, some of whom I remain close friends with to this day. But then, because life wasn’t hard enough at that moment, the pandemic hit, and I, like many others, had to go through the rest of treatment and surgery alone. I used this time to write a blog about my experience, and to try to educate others on Sarcoma as due to the rarity of the cancer there was not a lot of information or personal stories out there. It became a great focus for me, and I created a fantastic support network of other Sarcoma fighters, and suddenly having a Sarcoma diagnosis didn’t feel so lonely. In March 2020 my womb and ovaries were removed and at just 32 I was thrown into the menopause and infertility, something which I am still slowly trying to come to terms with. Unfortunately due to the aggression of my cancer and the fact that it had already spread to the nearby lymph nodes we were not able to save my fertility prior to treatment. However, I am incredibly grateful for the treatment that I received and despite everything that was thrown at me, I beat cancer, and in 2020 I celebrated getting to remission. My baby had her Mummy back. I could start to live my life again.
Due to how aggressive Ewing’s Sarcoma is I am still under surveillance and so I attend the hospital for scans every 3 and 6 months. After finishing treatment, I felt like I had been given a second chance at life and we decided to embrace that. We wanted to start afresh and so we relocated, and here I began working for TheGivingMachine. During my treatment so many great charities reached out to help me and my family, and now I feel so proud to be working for a great charity and be able to give back. We also support some great cancer causes such as Royal Marsden Cancer Campaign, Bone Cancer Research Trust, and Institute Of Cancer Research.
It is so important to be aware of the symptoms of sarcoma cancer, and always get them checked by a GP. Early detection saves lives.
Signs and symptoms of sarcoma -
- A lump which is growing, changing, or bigger than a golf ball
- Swelling, tenderness or pain in or around the bone which may come and go and may be worse at night
- Stomach pain, feeling sick, loss of appetite or feeling full after eating only a small amount of food
- Blood in either your poo or vomit
Signs of symptoms of bone sarcoma -
- Bone pain
- A lump or swelling may be seen or felt
- Inflammation and tenderness
- Mobility problems such as stiff joints or reduced movement
- Development of an unexplained limp, joint stiffness and reduced range of motion
- Easy bruising
- Weight loss
- Fracturing of the bone may occur due to the tumour weakening the area . This is known as a pathological fracture
- Loss of muscle tone
- A high temperature which does not go away