A BALLYMONEY lady, who was diagnosed with a spindle cell tumour, has set up a support group to provide information and support for others suffering from the rare disease.
Liz Henry from Kilraughts Road was diagnosed with a very rare type of a sarcoma, which is a soft tissue tumour that eats into the bone and has no known cure. However once diagnosed in November, Liz became even more concern over the lack of additional information about the tumour from medical professions and even the internet.
She told the Times: “After I was told that I had a spindle cell tumour at the end of November, I was told that this was a very rare type of a sarcoma, which is a soft tissue tumour that eats into the bone. I had surgery, and was told that this was a terminal cancer, with no known cure, and due to its advance stage, Chemo would not be effective. However no one was able to give me any additional information on the Spindle cell tumour, even on internet I could only get limited in information.
“After surgery check up, due to my amazing recovery and progress, I was offered Chemo. I can only say that this progress of recovery was through the prayers and support of many people, for which I am grateful.
“Due to the lack of information and the increasing numbers of Sarcomas in Northern Ireland, I decided to form the Sarcoma Support Northern Ireland group. The role of the group is support for patients as soon as they have been diagnosed, and to raise much needed funds for research.
“A sarcoma support system is in place in England with a new group started in Scotland. While the other groups are under the umbrella of Sarcoma UK, our group is independent ensuring funds raised in Northern Ireland will remain here for our own hospitals and patients.”
Explaining what a ‘sarcoma’ is, Liz continued: “Sarcomas are rare cancers that develop in the supporting or connective tissues of the body such as muscle, bone, nerves, cartilage, blood vessels and fat. There are around 3200 new cases of sarcoma diagnosed each year in the UK.
“Sarcomas account for about 11% of childhood cancers and about 14% of cancers in teenagers. Most sarcomas (about 55%) affect the limbs, most frequently the leg. About 15% affect the head and neck area or are found externally on the trunk, while the remainder will be found internally in the retroperitoneum (abdominal area).
“The causes of most sarcomas are unknown. There are some hereditary conditions that have a susceptibility to sarcoma but the number of cases is very small. Patients who had retinoblastoma (an eye cancer) as a child have a genetic defect, which also gives them a pre-disposition to sarcoma in later life. People with neurofibromatosis type 1 (a condition that causes the growth of benign and malignant tumours) may have a tendency to develop sarcoma.
“Soft tissue sarcomas can affect any part of the body; they develop in supporting or connective tissue such as the muscle, nerves, fatty tissue, and blood vessels. The most frequent location is on the limbs (mostly the legs), which account for about half of all the diagnosed cases.
Soft tissue sarcomas can also develop within the abdomen in specific organs like the stomach or intestines (known as GIST). Some soft tissue sarcomas are described as “retroperitoneal” which means that the sarcoma lies behind the tissue membrane which lines the abdomen and encloses many of the bodies vital organs – stomach, intestines, kidney, liver etc.”
To raise money for the group Liz’s neice, Lorna Henry also from Ballymoney decided to hold a fundraising table quiz in June.
Lorna explained: “I organized the table quiz in Ballymoney British Legion on 22 June and we raised a staggering £721.67 and last Thursday I presented Liz Henry of Sarcoma Support NI with the cheque for this amount.
“The event was a huge success and there are many people I would like to thank including Ballymoney British Legion for the use of there premises, Gerry McAleese and Noel Lamont for doing the quiz and those who came and supported us on the night. I would also like to show my appreciation to those who helped with the supper, those who brought prizes for the raffle and those who gave donations where at the event or not. Without such fantastic support the quiz would never have raised such a great amount.”
Also thanking everyone, Liz added: “I too would like to thank Lorna Henry for arranging the fundraising event, those who attended the Quiz night, the British Legion for the use of their lovely venue and most of all anyone who helped in anyway. I am already looking forward to the next one.”