“Mum is my role model in life. She’s been through so much and she just keeps going. She has been inspirational to all of us and is probably the bravest person I know.” These are the powerful words of 19 year-old Ben Smyth, as he describes his mother, 39-year-old Kirstie Smyth, who was diagnosed with Sarcoma in January 2023. Now, Kirstie is sharing her story to help raise awareness of this rare and often overlooked cancer to mark Sarcoma Awareness Month.
Kirstie who lives in Ballymartin near Annalong with her husband Conor, son’s Ben and Ollie and daughter, Amber Rose explained that her journey began when she noticed a small, pea-sized lump behind her knee one evening while sitting on her sofa. “I went to cross my legs and felt something unusual. I attended my GP, who initially thought it was a raised lymph node and nothing to be concerned about. But the lump began to grow.”
In October 2023, following an appointment at the Ulster Hospital, Kirstie received the life-changing news that she had Sarcoma cancer. “It was a massive shock, it flipped my whole world upside down,” she said.
Her surgeon arranged a series of staging CT scans to check whether the cancer had spread. “That was one of the hardest things to process. My thoughts immediately went to my children and husband, wondering what was going to happen. I was very lucky to have Jill, the Sarcoma Nurse, with me that day. She held my hand and still does. Getting the news that it had not spread felt like winning the lottery.”
Kirstie underwent three major surgeries over the course of ten weeks, including a wide excision and a skin graft, after the initial procedure failed to achieve clear margins. “The biggest impact for me was my mobility. A large portion of the back of my knee was removed, right on the bend, so I woke up in a full leg cast and needed crutches. Five weeks later, I underwent further surgery for a wider incision and after that, I required further surgery again to get another skin graft put onto the back of my leg, so in 10 weeks, I had three big surgeries. It was very, very tough. I had not realised how dependent I would become. I went from being totally independent to needing help with absolutely everything.”
Kirstie also underwent 30 sessions of radiotherapy, which presented additional challenges. “Because I could not drive, I had to rely on others to get me to the hospital every day for six weeks. It was physically and mentally exhausting.”
Despite the intense treatment, Kirstie continues to receive follow-up care. “I now attend chest X-rays every three months, because if Sarcoma comes back, it often goes to the lungs. It is a mental burden, but I remind myself how lucky I am to be so closely monitored.”
She credits her recovery to the dedicated team at the Ulster Hospital, particularly Consultant Surgeon, Mr Harry Lewis, Sarcoma Clinical Nurse Specialist, Jill Kennedy, and the staff on Ward 4C. “They were amazing and with me every step of the way. People think when you ring the bell, the journey is over, but really, it is only just beginning. The aftermath can be just as tough.”
Kirstie is passionate about spreading awareness of Sarcoma. “It is known as the ‘forgotten cancer.’ Many people I have talked to had never even heard of it. It is an aggressive cancer that can often go undetected until it has progressed. Early detection is vital and treatable.”
Her advice is simple, “If you notice a lump, even if it is painless like mine, get it checked. Ask the question. Do not be afraid to push for answers. A lump that is getting bigger should never be ignored.”
South Eastern Trust, Sarcoma Clinical Nurse Specialist, Jill Kennedy, emphasised the importance of early diagnosis, “Sarcoma Awareness Month is a chance to raise the profile of this rare cancer and drive home the need for early detection. Many patients experience delayed diagnosis, and we are working with GPs and primary care professionals to improve symptom recognition and help patients get diagnosed earlier.”
Jill added, “It is a privilege to support patients like Kirstie through such a difficult time. Our goal is to ensure they and their families feel fully cared for throughout their journey.
“Sarcomas are rare cancers that develop in the body’s connective tissues. There are two main types, bone sarcomas and soft tissue sarcomas. Symptoms can include a lump or swelling, unexplained pain, or reduced mobility. As with many cancers, early detection is key.”
You can access further advice and support by visiting: https://sarcoma.org.uk
For support groups and patient events in NI, visit: www.theboomfoundation.co.uk
