Sarcoma Voices are people who have been affected by sarcoma cancer, either as a patient, carer or family member, who want to share their story and experiences to help shape and improve sarcoma services and care and to raise awareness.
What are sarcomas?
Sarcomas are rare cancers that develop in the soft tissues of the body as well as bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues.
In fact, they are so rare that sarcomas make up only 1% of all cancers diagnosed in the UK, but this doesn’t make the condition any less devastating for the 3,800 new cases diagnosed each year. There are around 70 different sub-types of sarcoma each of which can be very difficult to diagnose. Currently there are around 12,000 people living with sarcoma in the UK and patients with a bone or soft tissue diagnosis tend to be younger than the majority of other cancer patients.
You may be surprised to know that 16% of bone or soft tissue sarcomas are diagnosed in patients under the age of 30, 11% in childhood and a further 14% in teenagers. Most sarcomas affect the limbs, most frequently the leg. About 15% affect the head and neck area or are found externally on the trunk, while the remainder will be found internally in the abdominal area.
Causes of Sarcoma
The causes of most sarcomas are relatively unknown, however some patients who had an eye cancer as a child could have a genetic defect which also gives them a pre-disposition to sarcoma in later life. People with neurofibromatosis type 1 (a condition that causes the growth of benign and malignant tumours) may have a tendency to develop sarcomas.
Occasionally patients who have had radiotherapy for another cancer are diagnosed with sarcoma and as they can appear almost anywhere on or in the body, many are only found following investigations for a condition, which may be unconnected with cancer.
How do you treat Sarcomas?
Sarcomas can be treated by radiotherapy, chemotherapy and surgery. Your doctor or consultant will plan your treatment taking into account:
- The type of sarcoma you have
- How far your cancer has grown or spread
- Your general health and fitness
- Your age
Coping with a new diagnosis
It must be very difficult to cope with a diagnosis of any form of cancer. I suppose at first it must be very upsetting even traumatic and the feeling of being frightened about what the future holds must add to the suffering. I would presume most people that have just heard they have cancer, may be questioning ‘why me’ or be confused if they appear to feel fit and healthy, or even feel helpless.
Another problem you may have to cope with is feeling very tired and lethargic a lot of the time, especially while receiving treatment or if the sarcoma is advanced. With any medical condition it is very important to get as much useful information about the condition and how it is best treated. This will help you to make the best decisions and possibly ease some of the concerns you may have.
Try and stay positive
However some people don’t always want to know lots of information about an illness in the early stages of diagnosis, as they need time to come to terms with being told they have cancer first. Well meaning friends or relatives may make all sorts of suggestions about what you can do. But you don’t have to make any sudden or drastic changes to your lifestyle as this could only add more stress to your life and unsettle you. If you have recently been diagnosed and treated, you may feel you have had enough change for a while.
I think I would need a period of time to reflect on the sudden changes to my life and time away from other daily distractions, to be able to find a way to digest the rafts of information and find my own way forward without interaction from others. I suppose we would all deal with bad news differently and what may work for one person may not for another.
If you choose to get away from it all and travel abroad, make sure you get specialist cancer insurance to give you the peace of mind protection in the event you need emergency medical treatment. Free Spirit’s confidential medical screening for specialist sarcoma cancer cover couldn’t be easier! We will ask you some questions about your condition so that you get the cover you need.