Frequently Asked Questions
About Sarcoma
What is sarcoma?
Sarcoma is a cancer that develops in the connective or supporting tissues of the body — bone, muscle, fat, cartilage, nerves and blood vessels. It is grouped into soft tissue sarcomas and bone sarcomas, and there are around 100 recognised subtypes.
How common is sarcoma in Ireland?
Sarcoma accounts for around 1% of all cancers diagnosed. About 300 people are diagnosed in Ireland each year, roughly 30 of them children. Sarcoma makes up around 10% of all childhood cancers.
Who gets sarcoma?
Anyone. Sarcoma affects men and women equally and occurs at every age. Some subtypes are more common in children and young adults, others in older adults.
What causes sarcoma?
For most people the cause is unknown, and nothing you did or did not do caused it. A small number of risk factors are recognised, including certain inherited conditions such as neurofibromatosis type 1 and a history of retinoblastoma, and previous radiotherapy — very occasionally a sarcoma develops many years after radiotherapy given for something else.
Is sarcoma hereditary?
The great majority of sarcomas are not inherited. A small number are linked to inherited genetic conditions. If there is a pattern of cancer in your family, mention it to your team, who can arrange genetic counselling if appropriate.
Symptoms and Diagnosis
What symptoms should I get checked?
A lump that is larger than a golf ball, growing, deep under the skin, or that has come back after being removed. Or bone pain that is persistent, getting worse, not linked to an injury, and present at night or at rest.
Most lumps aren’t cancer, so am I wasting my GP’s time?
No. Most lumps are not sarcoma, and your GP would far rather see you and reassure you. Having it checked costs very little; not having it checked can cost a great deal.
Why does diagnosis take so long?
Sarcoma is rare and its early signs look like far more common problems. Most GPs see only one case in a career. Diagnosis often needs several tests, and confirming the exact subtype requires specialist pathology and sometimes genetic testing.
Can I ask for a second opinion?
Yes, always, and it is a normal part of cancer care. Your team will not be offended. For a rare cancer it is entirely reasonable to want your case reviewed by a specialist sarcoma centre.
Treatment
Where should I be treated?
At a specialist centre. In Ireland, adults are referred to the National Sarcoma MDT at St Vincent’s University Hospital, with a satellite MDT at Cork University Hospital and orthopaedic oncology surgery at Cappagh. Children are referred to CHI at Crumlin.
Will I need chemotherapy?
It depends entirely on the subtype. Chemotherapy is central to treating osteosarcoma, Ewing sarcoma and rhabdomyosarcoma, and is used in some adult soft tissue sarcomas, particularly where the disease has spread. Many people with sarcoma are treated with surgery and radiotherapy alone.
Will I lose a limb?
Most people do not. The great majority of sarcoma operations on arms and legs are limb-sparing. Amputation is still necessary in a minority of cases, usually when major nerves or blood vessels are involved.
Are there clinical trials for sarcoma?
Yes. Because sarcoma is rare, trials matter enormously. Ask your consultant whether there is a trial suitable for your subtype, in Ireland or abroad.
What are my chances?
That is a question only your own team can answer, and even then only in general terms. Survival statistics online describe large groups of people over past decades and often do not reflect current treatment. If you want to discuss prognosis, ask your consultant directly — and if you would rather not know, tell them that too.
Our Services
Do I have to be referred to use your services?
No. You can contact us directly at any stage, and there is no charge for anything we provide.
Are your services only for patients?
No. Family members, partners, carers and bereaved relatives can use our counselling, support groups and Support Line.
I live outside Dublin — can I still take part?
Yes. Counselling and our monthly support groups are held online, so you can join from anywhere on the island of Ireland. We also run in-person peer groups in locations including Cork, Dublin and Limerick.
How do I apply for the €500 Patient Support Grant?
Download the application form from our Financial Support page, have the medical section completed and stamped by a consultant, oncology clinical nurse specialist, GP or hospital social worker, and email the completed form to grants@sarcoma.ie.
Supporting Us
Are you funded by the Government or the HSE?
No. We receive no State funding. Everything we do is paid for by donations from the public.
Do your board members get paid?
No. Every board member and volunteer gives their time free of charge.
Can I fundraise for you?
Please do — most of our income comes from supporters organising their own events. Email info@sarcoma.ie and we will send you a fundraising pack and help you get started.