I have been referred for investigations

I have been referred for investigations

 

Why have I been referred to a Sarcoma service?

  

The sarcoma service investigates and treats unusual or undiagnosed lumps, both cancerous and non-cancerous (benign). You may have been referred by your GP or by another healthcare professional such as a hospital consultant.  They may have asked the sarcoma service for advice about your case, or may have asked the sarcoma service to take over your care. This is to ensure you receive the most appropriate investigations and treatment, guided by teams who are experts in this specialist area.

 

A GP can refer you to a sarcoma service in two ways, on a ‘Two Week Wait’ pathway or a ‘routine’ pathway. The ‘Two Week Wait’ referral system was introduced for situations where there may be a suspicion of cancer so that conditions can be diagnosed as quickly as possible. It is therefore important that you attend all of your appointments.  A routine pathway is used when there is no suspicion of cancer but specialist input is still required.

 

Does this mean I have cancer?

 

Most lumps and bumps are benign; this means they are not cancer. Most people (Sarcoma UK believe 8 out of 10 people) referred to a sarcoma specialist centre do not have a sarcoma (cancerous tumour). There are a number of benign conditions that are still managed by a sarcoma service. Sometimes, it can be hard to tell a benign lump from a sarcoma. Where there is any uncertainty we aim to investigate you as quickly and efficiently as possible. If you are diagnosed with a sarcoma we want to have the opportunity to make a management plan with you as soon as we are able.

 

What happens next? 

Following a review of your referral, you will be contacted by a member of our team to discuss the next steps with you. This may be:

  • a member of our radiology team- to book a test or investigation;
  • a keyworker (specialist practitioner, physiotherapist or clinical nurse specialist) or consultant- for a virtual consultation;
  • a member of our administrative team- to book an outpatient appointment.

We will often ask you to undergo further tests and investigations in order for us to make a diagnosis and/or assess treatment options.

 

Investigations and tests

Our specialist team may recommend different tests, such as:

  • Ultrasound
  • Magnetic Resonance Imaging (MRI)
  • Computed Tomography (CT)
  • X-ray
  • Ultrasound-guided or CT-guided biopsy
  • Physical examination

You may be asked to attend City Hospital and/or Queen’s Medical Centre for investigations. The appointment may be made a short notice and it is likely you will be contacted by telephone in this situation. Please check the details carefully to make sure you are know where and when the appointment is scheduled.

 

Waiting for the results?

It can take a few weeks for us to reach a conclusion, as some lumps are more difficult to diagnose than others. Your test results are reviewed by our team of experts known as a multidisciplinary team (MDT). The MDT will discuss your diagnosis and the best management options; we will arrange to talk to you as soon as an outcome is confirmed.

 

We understand that waiting for a diagnosis can be an anxious time. If your symptoms worsen or the lump is rapidly growing, you should contact the person who has referred you (most likely your GP) so they can help manage your symptoms and speak to the most relevant member of the sarcoma team. If you have been given the contact details of a sarcoma keyworker, they can also offer support or information during this time. You can also speak to a trained professional at the Sarcoma UK Support Line on 0808 801 0401.

 

I have a lump but have not been referred to a sarcoma service

 

Not all lumps require investigation and management by a specialist team. Many benign lumps do not require any treatment at all. If you have a lump that is greater than 5 centimetres and/or growing, then you should discuss with your GP whether you first require an ultrasound scan. If you are concerned and are unsure whether you should be having further investigations or referral, the Sarcoma UK helpline (https://sarcoma.org.uk/) can give you advice on the best way to talk about this with your GP.

I have been diagnosed with a sarcoma

I have been diagnosed with a sarcoma

 

Soft tissue sarcomas are rare cancers that can occur in any part of the body within the supporting or connective tissues such as muscle, nerves, tendons, blood vessels and fatty and fibrous tissues. There are many different subtypes and they can occur in any age group. We are one of 15 NICE accredited specialist treatment centres for soft tissue sarcomas in England and Wales.

Sarcomas can also arise from bone and these are even rarer than soft tissue sarcomas. There are only five centres in England who are able to diagnose and treat people with bone sarcoma and our closest centre is the Royal Orthopaedic Hospital in Birmingham.

Everyone who is diagnosed with a sarcoma should be referred to a specialist centre so that a treatment plan can be agreed between them and a group of healthcare professionals who specialise in sarcomas. We also provide a specialised service for management of certain benign conditions. The sarcoma team is comprised of highly trained and dedicated health care professionals. The service has a team of keyworkers with specialist expertise in supporting patients with a sarcoma diagnosis and you will be given their contact details so that you can access help and advice when required.

Treatment plans for sarcoma are made on an individual basis and the team will advise which treatments are available for your situation.   Nearly all surgery for people with sarcoma who live in the East Midlands is performed at Nottingham University Hospitals (NUH). Treatments such as radiotherapy and chemotherapy may be offered at other hospitals if these are closer to your home, but treatment can only be offered by sarcoma specialists. This might mean you need to travel for treatment. Besides NUH, members of the sarcoma team work in Leicester, Derby, Lincoln and Northampton.

Once you have been diagnosed with a sarcoma, a long period of outpatient follow-up will be offered. Dedicated sarcoma follow-up clinics take place at NUH, Leicester and Derby and the location will be recommended depending on the treatment received and where you live. Investigations, treatment and ongoing follow up regimes will depend on the type and location of your sarcoma. You should discuss these with your managing team. For further information, Sarcoma UK produces a number of patient information leaflets, see https://sarcoma.org.uk/

 

Extremity sarcoma service

Soft tissue sarcoma diagnostic clinics are held at City Hospital (NUH) and Leicester Royal Infirmary. People with lumps and bumps in the outer parts of the body, including the arms and legs, head and neck and chest or tummy wall will be referred here for investigations and diagnosis. If surgery is planned it will usually be carried out at City Hospital. Radiotherapy and chemotherapy can be offered at City Hospital, Leicester or Derby. Sometimes oncology treatments can be provided at Lincoln and Northampton depending on the circumstances.

Retroperitoneal sarcoma service

The retroperitoneal sarcoma service manages sarcomas that occur inside the tummy. The retroperitoneum is deep in the tummy where structures such as the major blood vessels, kidneys, pancreas and bladder are located. This service also manages Gastrointestinal Stromal Tumours (GISTs) – a type of sarcoma that develops in the gastrointestinal (GI) tract, which is essentially a long tube running through the body from the oesophagus (gullet) to the anus (back passage) and otherwise known as the digestive system.

The retroperitoneal sarcoma service is hosted at Queen’s Medical Centre (NUH). This is where all clinic appointments and surgery will be carried out. Radiotherapy and chemotherapy can be offered at City Hospital (NUH), Leicester or Derby. Sometimes oncology treatments can be provided at Lincoln and Northampton depending on the circumstances.

 

Special areas

 

The East Midlands Sarcoma Service works closely with other specialist teams to ensure that optimal management is offered for all types of sarcoma. This includes teams who are experienced in treating gynaecological tumours (female reproductive organs), head and neck tumours, skin cancer, breast cancer, chest wall and lung tumours, cardiac tumours, and tumours in children, teenagers and young adults.

 

 

Support

 

We recognise that having cancer and being treated for it can be a very difficult experience and can affect many aspects of life. Emotional support can be accessed in a number of ways:

Keyworkers

All patients will be given the name of a clinical nurse specialist or other keyworker that can guide them through their diagnosis and treatment and provide emotional support and information.

Counselling and Psychological services

Counselling can generally be accessed via your GP or clinical nurse specialist. Some services in the East Midlands accept self-referrals, your clinical nurse specialist or keyworker can discuss these options with you.

 

Sarcoma UK

Sarcoma UK Support Line specialists are available for every person affected by sarcoma. Talk to them, email or text for information and support. 

 

Opening hours: Monday to Friday, 10am - 3pm (closed Bank Holidays)

Phone: 0808 801 0401
Email: supportline@sarcoma.org.uk
Text: 07860058830 

Useful contacts

Useful contacts

City Campus NUH

Hucknall Road

Nottingham

NG 1PB

Telephone: 0115 9691169

 

Please click to view site map

City Map link

Queens Medical Centre (QMC) NUH

Derby Road

Nottingham

NG7 2UH

Telephone: 0115 9249924

 

Please click to view site map

QMC Map link

 

 

Keyworkers – Extremity Sarcoma

 Location – City Campus, Nottingham

Contact

Sarah Franczak

Trainee Sarcoma Clinical Nurse Specialist (Extremity Surgery)

 

Sarah.Franczak@nuh.nhs.uk

07812 276099

Lynsey Green

Clinical Specialist Sarcoma Physiotherapist

 

Lynsey.Green@nuh.nhs.uk

07812 268743

Keyworkers – Retroperitoneal Sarcoma

Location – QMC Campus, Nottingham

Contact

Kim Adams

Specialist Practitioner

 

Kimberley.Adams2@nuh.nhs.uk

07812 276929

 

Keyworkers – Oncology

 Location – City Campus, Nottingham

 

Nicola Wilshaw

Sarcoma Clinical Nurse Specialist (Oncology)

nicola.wilshaw@nuh.nhs.uk

07812 268125

 

 

 

Admin team – Extremity Sarcoma

Location – City Campus, Nottingham

Contact

For appointment queries only

For surgery queries only

 

01159 691169  Ext 76934/ 72084

01159 691169  Ext 76428

Admin team- Retroperitoneal Sarcoma

Location – QMC Campus

For appointment & surgery queries

 

Contact

 

0115 9249924  Ext 86805

Admin team – Oncology

Location – City Campus, Nottingham

Contact

For appointment queries only

 

01159 691169  Ext 72468