The main symptoms of sarcoma are:

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

It is important to remember most lumps and pains are not sarcomas, and this list doesn’t cover everything.

Soft tissue sarcoma

These can develop in any tissues that support, connect, surround and protect the organs of the body and include: fat, muscle, nerves, fibrous tissues, tendons and ligaments, blood vessels

There are about 100 subtypes of sarcoma but some of the main soft tissue sarcoma are:

Leiomyosarcoma
Rhabdomyosacroma
Gastrointestinal stromal tumour (GIST)
Kaposi’s sarcoma

Bone sarcomas

Osteosarcoma
Chondrosarcoma
Ewing sarcoma
Chordoma

Referral routes

If you notice any suspicious symptoms please see your GP who might request further investigations or scans. Your GP or hospital team can refer you to the sarcoma Multidisciplinary Team Meeting (MDT) which is on a Wednesday afternoon.

Practical Information

Use the section below to help you find answers to some of the common practical questions that you may have. Simply click on the blue panel and it will expand to give more information on the relevant section.

Getting here & maps

All appointments with the sarcoma team are either at the Edinburgh Cancer Centre at the Western General Hospital or at the Edinburgh Royal Infirmary.

To find your way to your appointment at the Western General Hospital (chemotherapy), Edinburgh see NHS Lothian's hospital page.

To find your way to your appointment (surgical appointments and treatments) at the Edinburgh Royal Infirmary, see NHS Lothian's hospital page.

Your first appointment

At your first appointment we will go over all your scans and test results with you to ensure you have all the information you need. We may discuss the need for further investigations. We will talk through what we do next and that might include treatment like chemotherapy or radiotherapy. It might be focusing on symptom control, what we call best supportive care. This appointment is a chance for you to ask any questions you may have so it is helpful to bring them written down and also to bring someone with you to help support you.

At your first appointment to see the specialist doctor, you will be asked about what is concerning you about the signs and symptoms you are experiencing.

This appointment is a chance for you to ask any questions you may have so it is helpful to bring them written down and also to bring someone with you to help support you.

Asking your healthcare professional the right questions will help you decide the tests and treatments that are right for you. We therefore encourage you to ask the BRAN questions at your appointment.

What are the Benefits?

What are the Risks?

What are the Alternatives?

What if I do Nothing?

Multidisciplinary Team Meeting MDT)

At this meeting your scans and investigations are discussed with a team of experts who work together to decide on what we do next. Generally after this meeting we will arrange an appointment to see you in clinic to discuss the proposed plan.

What happens next

After the multidisciplinary team meeting (MDT), the team will be in contact with the medical team that referred you, to either request further investigations or to arrange an appointment to see you.

Treatment and Investigations

Treatment depends on the type of sarcoma.

Surgery

Many people have their tumours removed with surgery. Other treatments include radiotherapy and chemotherapy.

Chemotherapy or radiotherapy

Depending on the type of cancer and your general health we may talk to you about chemotherapy (cancer drug treatment) or radiotherapy (X-ray treatment) to try to slow down the cancer growth or to help you feel better. We will give you information about the possible benefits and downsides of any treatment and will talk to you about possible side effects. You should take time to decide if these treatments are the right choice for you.

Research

We may also talk to you about any relevant clinical trials or research projects.

Best Supportive Care

Best Supportive Care focuses on quality of life and aims to help you live as well and as comfortable as possible, rather than curing the cancer. Best Supportive Care can:

Help with symptoms such as breathlessness, pain, sickness or problems eating
Help you and the people you care about come to terms with the diagnosis and what it means
Help you talk about the future and plan ahead. This can be hard to do but can help you feel more prepared and in control
Support you to manage at home

Best Supportive Care is usually provided by a combination of people, including: GPs and District Nurses, Cancer Specialist Nurses and Specialist Palliative Care.

Your care team

The Sarcoma clinical nurse specialists team will provide support and practical advice throughout your treatment pathway. The CNS team work closely together with the wider multi disciplinary team to ensure a seamless service. There are 3 Clinical Nurse Specialists within the sarcoma team to provide you with support.

A Surgical Sarcoma CNS based at the Edinburgh Royal Infirmary, an Oncology CNS based at the Western General Hospital and an Oncology CNS based in Fife.

Handy hints

Think about arranging transport, time off work or childcare for the day of your appointments.
Make sure you know where you are going.
Bring a pen and paper to take notes.
Try to bring a friend or family member with you.
Allow extra time in case it takes longer than expected.
Make sure your mobile phone is charged.
Don’t be afraid to ask questions. Think about questions you might like to ask, such as:
What are the Benefits?
What are the Risks?
What are the Alternatives?
What if I do Nothing?

Services useful to you

The following websites can point you to help and support:

Penny Brohn

Yes to Life

Circle of Comfort charity

The Maggie’s Centre is next to the Victoria hospital and is a great place to get support and guidance. You can just drop in and meet the team. They are open Monday to Friday.

Provide feedback via Care Opinion

The most effective way to feedback about your patient experience is to use the Care Opinion website. Care Opinion allows you to truthfully share your experience with us and with others. This site is moderated and your comments will be both seen and reviewed.

Queen Margaret Hospital/ Dermatology

Victoria Hospital/ Dermatology

Accessible formats

If you require this information in a community language or alternative format such as Braille, audio, large print, BSL, or Easy Read, please contact the Equality and Human Rights Team at: email: fife.EqualityandHumanRights@nhs.scot or phone 01592 729130. For people with a hearing or verbal impairment you can also contact the team through the NHS Fife SMS text service number on 07805800005.

You can also find health related information on many topics in an Easy Read format on nhsinform.scot.

Sarcoma

Soft tissue sarcoma

Bone sarcomas

Referral routes

Practical Information

Help me find information on

Getting here & maps

Your first appointment

Multidisciplinary Team Meeting MDT)

What happens next

Treatment and Investigations

Surgery

Chemotherapy or radiotherapy

Research

Best Supportive Care

Your care team

Handy hints

Services useful to you

Provide feedback via Care Opinion

Accessible formats

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