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SARCOMA AWARENESS MONTH

Raising awareness about this rare and often overlooked type of cancer.

Woman diagnosed with sarcoma sitting at home and drinking tea


ABOUT SARCOMA AWARENESS MONTH


Sarcoma Awareness Month is a campaign emphasizing the importance of an early sarcoma diagnosis and advocating for reducing the number of days it takes to diagnose this rare cancer. According to the Sarcoma UK, almost 1 in 3 sarcoma patients wait over 6 months to be diagnosed after their initial appointment. This year the charity has launched ‘Days to Diagnosis’ campaign, featuring real patient stories that highlight their experiences in getting a sarcoma diagnosis.


Our ‘Days to Diagnosis’ initiative reveals a stark reality – the path to a sarcoma diagnosis is often fraught with challenges. Many healthcare professionals are unfamiliar with sarcoma symptoms, and the referral process can be frustratingly complex and inconsistent across regions. This can lead to misdiagnoses, delayed diagnoses, or symptoms being overlooked entirely.

- Richard Davidson, Chief Executive of Sarcoma UK



The charity also estimates that 75% of people in the UK don't know what sarcoma is, and those who do aren't all aware of its signs and symptoms. That's why Sarcoma Awareness Month aims to reach new audiences unfamiliar with sarcoma to raise awareness of the symptoms so that everyone affected by sarcoma receives timely, effective care.




WHAT IS SARCOMA?


Sarcoma is a rare type of cancer that can appear anywhere in the body, on the inside or outside.


There are two main types of sarcoma:

  • soft tissue sarcoma - it starts in any supportive or connective tissues including muscle, fat, nerves, fibrous tissues, tendons and ligaments, as well as blood vessels

  • bone sarcoma (also called primary bone cancer) - it starts in the bone


Within these two sarcoma types, there are around 100 subtypes.



SOFT TISSUE SARCOMA

The most common areas where soft tissue sarcoma can develop are the arms and legs. However, it can start anywhere in the body, including the:

  • stomach

  • womb (uterus)

  • small or large bowel (intestines)

  • skin

  • area at the back of the tummy (abdomen) called the retroperitoneum

  • head and neck



WHAT CAUSES SOFT TISSUE SARCOMA?

The exact causes of soft tissue sarcoma are not known and more research needs to be done to fully understand how sarcoma develops. There are certain things that can increase the risk of sarcoma:

  • age - although people can get sarcoma at any age, the risk increases as we get older

  • genetic conditions - some rare genetic conditions like Neurofibromatosis and Li-Fraumeni syndrome can increase the risk of getting sarcoma

  • previous radiotherapy - very rarely a soft tissue sarcoma develops in a part of the body that has been treated with radiotherapy for another type of cancer

  • exposure to chemicals - certain chemicals like vinyl chloride have been associated with increased rates of soft tissue sarcoma


WHAT ARE THE SYMPTOMS?

The symptoms of a soft tissue sarcoma depend on the size of the cancer and the part of the body affected. They often don't cause any symptoms until they start pressing on an organ, nerve or muscle.


The main symptom is a lump or swelling that is:

  • growing and changing

  • bigger than 2in (5cm)

  • painful or tender


Most soft tissue lumps are not cancer but it's important to have them checked by the GP who may arrange further tests.


If there is a sarcoma in the central part of the body, the symptoms will depend on the organ that is affected.

  • Sarcoma in a lung can cause a cough and breathlessness

  • Sarcoma in the abdomen can cause pain and swelling, vomiting or constipation

  • A gastrointestinal stromal tumour (GIST) can cause bleeding in the bowel, dark-coloured poo and blood in vomit. It may also cause shortness of breath and tiredness

  • Sarcoma in the womb can cause bleeding from the vagina or pain in the pelvis



HOW IS IT DIAGNOSED?

People usually start by seeing their GP, who will do a clinical examination and refer them to a specialist doctor who will arrange a range of tests. These tests will depend on the symptoms and may include:

  • Ultrasound scan

  • MRI scan

  • CT scan

  • Endoscopy

  • Biopsy


If the tests detect a soft tissue sarcoma, the doctor may do further tests to find out the size and position of the cancer and whether it has spread to other parts of the body. These may include chest x-ray, PET or PET-CT scan, cytogenetic testing, or immunohistochemistry.


Patient having a scan at the hospital

WHAT IS THE TREATMENT?

The treatment for soft tissue sarcoma depends on several factors, including:

  • the type of sarcoma

  • where it started in the body

  • the grade and stage of the sarcoma

  • the general health


Surgery is the most common treatment for soft tissue sarcoma. People with sarcoma might also have chemotherapy or radiotherapy, depending on their individual circumstances.




BONE SARCOMA


Bone sarcoma is very rare. According to the Cancer Research UK, around 550 people are diagnosed each year in the UK. Primary bone cancer starts in the cells of the bones. This is different from secondary or metastatic bone cancer, which spreads to the bones from elsewhere in the body.


There are several different types of primary bone cancer. The most common types are:

  • osteosarcoma - the most common type affecting mainly the upper arms or legs

  • chondrosarcoma - mostly found in the bones of the pelvis, including those that make up the hip joints, shoulder bones, thigh bones or ribs

  • Ewing sarcoma - often starts in the pelvis, thigh bones, shoulder bones or the ribs



WHAT CAUSES BONE SARCOMA?

The exact causes of bone sarcoma are not known but there are some factors that may increase the risk of developing it.

  • age - the risk of bone cancer increases with age. Chondrosarcomas and spindle cell sarcomas tend to occur in adults between the ages of 30 to 60, while chordomas are more common in adults over 50 years of age. However for osteosarcoma and Ewing sarcoma, adolescents and children have a higher risk.

  • previous cancer treatment - radiotherapy or some chemotherapy drugs may increase the risk of developing primary bone cancer many years later

  • genetic conditions - Li-Fraumeni syndrome may increase the risk of developing osteosarcoma

  • bone conditions - Paget’s disease of the bone or Fibrous dysplasia



WHAT ARE THE SYMPTOMS?

  • pain or tenderness - this may start as an ache in the affected area that doesn't go away and can feel worse during or after exercise

  • swelling - if there is swelling near the affected area of the bone, the cancer may not be noticed until the tumour is quite large

  • reduced movement of a joint or limb - if the cancer is near a joint, it may be harder to move the joint. Also, movement in the arm or leg may be affected, and if the affected bone is in the leg, it may cause a limp.

  • broken bone - a bone that has been weakened by cancer may break after a small fall or accident, or without any warning



Ewing sarcoma may also cause tiredness, weight loss, a high temperature or sweats.


Many of these symptoms can be caused by other conditions that are more common than bone sarcoma. However, any new symptoms that don't go away should be checked by the doctor.


Woman having pain in her leg

HOW IS IT DIAGNOSED?

People usually start by visiting their GP, who will do clinical examination and might refer them for tests or to a specialist.


  • bone x-rays

  • MRI scan

  • biopsy

  • cytogenetic testing

  • immunohistochemistry testing


If the tests show that there's a bone cancer, further tests may be done to find out if the cancer has spread outside the bone. These can include a chest x-ray, a chest CT scan of the lungs, bone marrow sample, bone scan, as well as PET or PET-CT scan.



WHAT IS THE TREATMENT?

The treatment for primary bone cancer depends on where the cancer started in the body and whether it has spread, the size of the tumour, and the general health of the patient. Treatment options include:

  • surgery - used to remove the cancer in the bone

  • chemotherapy - most people with primary bone cancer will have chemotherapy, however it's not generally used for people with chordoma or chondrosarcoma

  • radiotherapy - mainly only used to treat Ewing sarcoma

  • targeted therapy - sometimes used to treat osteosarcoma after surgery, however it is only suitable for some people




SUPPORTING EMPLOYEES WITH A SARCOMA


Manager talking to the employee about their health

A sarcoma diagnosis can feel overwhelming and affect various aspects of life including employment. As an employer, you may be faced with supporting staff at various stages of their diagnoses, treatment and recovery. There is no single right way to support someone through a cancer journey, but helping an employee to remain in or return to work when they feel able and ready to do so, can really make a big difference to them. The following tips can help you support your employees when they have been diagnosed, are going through treatment and living with sarcoma.



Approach the situation with sensitivity and respect

Not everyone feels comfortable telling others they are affected by cancer. Your employee may not want their colleagues to know about the situation and it’s important to respect that. However, if the employee wants to share this information with other members of staff, agree a communication plan with your employee early on, including what you will, and will not mention to others.



Communicate effectively

As soon as you become aware that an employee has been diagnosed with sarcoma, encourage them to have a confidential and supportive discussion. Show empathy and listen to your employee trying to understand their situation. It is fine to ask questions when they are sharing information with you. It is also important to keep in contact with the employee if they are on sick leave. Ask your employee how they would like to be contacted and make sure you keep in touch while they’re away. Remember to review this regularly as their situation and how they want to be contacted may change.



make REASONABLE adjustments

Employees living with sarcoma are protected against discrimination in the workplace under the Equality Act, which states that employers must make reasonable adjustments that will allow such employees to remain at or return to work. This may include things like flexible working hours, adapting their role and duties, taking extra breaks, allowing working from home etc. Many of the adjustments are inexpensive, small and easy to implement, and can be hugely beneficial for employees. Through our Management Referral Service, the Occupational Health Advisors can advise on reasonable adjustments, devise a suitable return to work plan, and provide guidance on how to support the employee on an ongoing basis.



Ensure employees CAN access support services

A sarcoma diagnosis can be overwhelming and many people will feel worried, angry, or uncertain. They can experience stress and anxiety both before, during or even after treatment. Therefore, it’s crucial that employees have an access to different services that can provide emotional and general support. There are several charities that offer help and guidance for people who have been diagnosed with cancer. Provide your employees with the details of how they can contact these organisations for support, for instance:


  • Sarcoma UK - the charity offers both online and local support groups which provide the opportunity to meet with other people in the same situation. It also runs a free Support Line (0808 801 0401) available Monday to Friday, 10am-3pm. It's also possible to send them a text message to 07860 058830 or send an e-mail to supportline@sarcoma.org.uk.

  • Macmillan Support  - people can call their specialist nurses for free (0808 808 00 00), send an email, use online chat, join online community, apply for a Macmillan Grant, get information about financial help, sign up for support from a Macmillan Buddy or look for support groups in their local area.

  • Cancer Research UK - it offers a free telephone helpline (0808 800 4040) and e-mail service where people can ask a specialist nurse questions.

  • Maggie's - it provides information and support to anyone with cancer and their loved ones, at their centres and online.


At Corazon Health we are also able to organise both face to face and telephone counselling sessions for your employees. A wide range of topics can be addressed during counselling sessions, which are conducted by practitioners registered with the British Association for Counselling and Psychotherapy. We also offer an Employee Assistance Programme (EAP) that has a complete resource of wellbeing services including 24/7, 365 counselling, legal and information line, as well as medical information line where qualified counsellors, nurses and advisors are on-hand to offer support and guidance on a range of issues.


Man diagnosed with sarcoma during group support therapy session

Work is often a huge part of someone's life. For many people it can provide a sense of self-worth and allow them to focus on their abilities, not just their illness. Therefore, it's crucial that organisations understand their role in helping impacted employees remain in work. Macmillan at Work website has plenty of resources and guidance on how you can support employees diagnosed with cancer.  10 top tips for line managers  leaflet  also provides useful advice and Maggie's has Support for Employers section on their website where you can find some additional information.

 

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