Diagnosis & Tests
Getting to a sarcoma diagnosis often takes longer than it should. Sarcomas are rare, they can appear anywhere in the body, and the early signs — a lump, or a persistent ache — look like far more common and far less serious things. Most GPs will see only one sarcoma patient in an entire career.
This page explains what usually happens, from the first appointment to a confirmed diagnosis, so that you know what to expect and what to ask.
Starting with Your GP
Most journeys begin with a GP appointment about a lump or about pain. Your GP will examine you, ask about how long the symptom has been there and whether it is changing, and may arrange blood tests or an X-ray.
If a sarcoma is suspected, national and international guidance is clear about what should happen next:
- For a suspected soft tissue sarcoma — an urgent MRI, performed within two weeks for adults or 48 hours for children.
- For a suspected bone sarcoma — an urgent X-ray or MRI, performed within two weeks for adults or 48 hours for children.
- If the imaging suggests sarcoma, referral to a sarcoma specialist or to the National Sarcoma MDT rather than local treatment.
It is entirely reasonable to ask your GP directly: “Could this be a sarcoma, and should I have a scan?” Asking that question is not being difficult. It is one of the most useful things a patient can do.
Scans and Imaging
X-ray – quick and painless, and usually the first test where bone pain is the symptom. It can show changes in the bone.
MRI scan – uses magnetic fields rather than radiation to build a detailed picture of soft tissue and bone. You lie inside a tunnel-shaped scanner for 20–60 minutes. It is noisy, and you will be given ear protection. Tell the team beforehand if you have any metal implants, or if you find enclosed spaces difficult — sedation can usually be arranged.
CT scan – a series of X-rays that build a cross-sectional picture. Often used to check the chest, since this is where sarcoma is most likely to spread. Usually takes only a few minutes.
Ultrasound – a handheld probe and gel, used to get a first look at a lump close to the surface. Quick, painless and often available locally.
PET-CT scan – involves a small injection of a radioactive tracer that highlights active cells. Used to check whether cancer has spread and, in some cases, to assess response to treatment.
Bone scan – another tracer-based scan used to look at the whole skeleton.
Biopsy
A biopsy is the only way to confirm a sarcoma diagnosis and to identify the exact subtype. A small sample of the tumour is removed and examined under a microscope by a pathologist.
Core needle biopsy – the most common approach. A hollow needle takes one or more small cores of tissue. You will have a local anaesthetic; if the lump is deep, an ultrasound or CT scan is used to guide the needle. Children usually have a general anaesthetic.
Surgical biopsy – part of the lump, or occasionally the whole lump, is removed through a small incision under local or general anaesthetic.
Where a sarcoma is suspected, the biopsy should be planned by or in consultation with a specialist sarcoma team. The route the needle takes has to be removed during later surgery, so a biopsy done in the wrong place can make the operation that follows more difficult. This is one of the strongest reasons for referral to a specialist centre before biopsy.
Getting the Results
Sarcoma pathology is complex. Samples are often reviewed by specialist sarcoma pathologists and may need additional genetic testing, so results can take a week or two, sometimes longer. It is a hard wait, and there is no way to make it easy.
Your case will then be discussed at a multidisciplinary team meeting (MDT) — a meeting of surgeons, oncologists, radiologists, pathologists and specialist nurses who agree a recommended plan together before it is discussed with you.
Grading and Staging
Once a sarcoma is confirmed, two things are described:
Grade – how abnormal the cells look under the microscope and how quickly the tumour is likely to grow. Soft tissue sarcomas are graded 1 to 3 using the FNCLCC system, which scores how closely the tumour resembles normal tissue, how many cells are dividing, and how much of the tumour is dying off. Grade 1 is least likely to grow and spread.
Stage – the size and position of the tumour and whether it has spread, usually described using the TNM system. T describes the size of the tumour (T1 is 5cm or less, T2 is larger), N whether nearby lymph nodes are involved, and M whether the cancer has spread elsewhere. These combine with the grade to give an overall stage from 1 to 4.
Staging is genuinely confusing, and nobody expects you to follow it first time. Ask your team to write it down for you, and ask again at the next appointment if it has not stuck.
Making the Most of Appointments
- Write your questions down before you go, and put the most important one first.
- Bring someone with you. Two people remember more than one.
- Ask if you can record the conversation, or take notes as you go.
- Ask for the full name of your sarcoma subtype, in writing.
- Ask who your point of contact is between appointments — usually a clinical nurse specialist — and how to reach them.
- It is always reasonable to ask for a second opinion. Your team will not take offence.
We Can Help
If you are waiting on results, or trying to make sense of a report you have been given, you do not have to do it alone. Call our Support Line on 085 769 4115 (Tuesdays 10am–1pm, Thursdays 5pm–8pm) or email support@sarcoma.ie.