Here's a guide to what having a sarcoma means, and how you can live more comfortably with sarcoma cancer...
By Marian Trudgill
Bone sarcoma (also known as primary bone cancer) is a rare form of cancer that begins in the bone. While bone sarcoma can affect any bone in the body, it commonly occurs in the long bones of the legs and the upper arms.
There are four main types of bone sarcoma:
- Chondrosarcoma - this develops in the cartilage cells which cover the ends of the bones, and mainly affects people over the age of 40. Chondrosarcoma is often situated in the upper arm, shoulder, thigh, pelvis or hip bones
- Osteosarcoma - this tends to affect mostly children and young people under 20, and is most commonly found in the knee, thigh, shin or upper arm
- Ewing’s sarcoma - this form of sarcoma affects mostly children and young adults, and is commonly found in the pelvis, thigh or shin bone. Ewing’s sarcoma can sometimes also develop in the soft tissue around the bone
- Chordoma - this affects the bones in the spine and skull. It tends to affect adults between 40 and 70, and commonly develops at the bottom of the spine (the sacrum) or the base of the skull.
Soft tissue sarcoma
Soft tissue sarcoma is a rare form of cancer which develops in the supportive and connective tissues of the body - this includes the muscles, nerves, cartilage, tendons and ligaments, blood vessels, and fatty and fibrous tissues.
While soft tissue sarcomas can affect almost any part of the body, they often occur in the arms, legs or torso. They can affect anyone, but most commonly occur in middle-aged and older people.
Some of the more common types of soft tissue sarcoma include:
- Leiomyosarcoma - this affects the smooth muscles in the body and is commonly found in the uterus (womb), torso, arms and legs
- Fibroblastic sarcoma - this develops in the fibrous tissues and is commonly found in the limbs, skin and torso
- Liposarcoma - this begins in the fat cells of the body, and often occurs in the muscles of the limbs and abdomen
- Gastrointestinal stromal tumour (GIST) - this can occur anywhere in the digestive tract, often being found in the stomach and small intestine
Treatment for sarcoma cancer
Depending on the type of sarcoma, its stage and grade, and where it is in the body, the main treatments normally used for sarcoma are surgery, radiotherapy and chemotherapy, or a combination of these. (A medication called mifamurtide may also be used to treat osteosarcoma.)
Surgery is often used to remove the tumour, together with a portion of the surrounding tissue. Depending on the cancer, it may sometimes be necessary to remove a limb (amputation), although this will be avoided wherever possible.
Radiotherapy can be used in conjunction with surgery, either to help shrink the tumour for removal or to target any remaining cancer cells after surgery. Chemotherapy can also be used before or after surgery to help destroy cancer cells, particularly bone sarcomas, as well as certain soft tissue sarcomas.
Following the initial treatment for your sarcoma, you may have access to a range of other therapies to help with your rehabilitation, such as occupational therapy to help with carrying out day-to-day activities, physiotherapy to help rebuild the strength in your muscles and joints, and orthotics and prosthetics for help with splints, supports or artificial limbs.
Being more comfortable with sarcoma cancer
Living with sarcoma cancer can be uncomfortable and exhausting. The good news is, there are lots of things you can do to help feel more comfortable.
Getting comfortable in bed
While you’re recuperating from your sarcoma treatment, it’s important that you are as comfortable as possible. If you’re suffering from pain or discomfort in bed, using a heat wrap or ice pack can help. The Live Better With community recommend the fleecy microwaveable lavender wrap, which is soft and comforting and contains natural wheat and lavender for soothing relief.
Using specialist cushions and pads such as the Comfortnights V-shaped pillow can also offer welcome support and help to reduce any pressure. Meanwhile, a back rest or mattress tilter can help you to find a more comfortable position in bed.
Dealing with side effects
Treatments such as radiotherapy and chemotherapy can cause various side effects, including hot flushes and night sweats. Wearing loose, breathable clothes and bedding made from natural materials can help you to feel more comfortable. The Live Better With community recommend bamboo, which is naturally soft and moisture-wicking. Popping a cooling gel pillow inside your pillowcase can also help to soothe hot flushes and regulate your temperature.
Meanwhile, if you’re suffering from sore or itchy skin as a result of your treatment, using a skin oil or moisturising cream such as calendula cream can help to reduce dryness and inflammation.
Bathing and getting around
When you’re having treatment for sarcoma, it can be difficult to get wash yourself and get around the bathroom. However, there are lots of different products that can help with bathing and mobility, from grab bars and washing aids, to adjustable shower stools and padded toilet seats. And if you have a PICC line, you can keep it protected while you bathe by using a reusable waterproof cover.
Getting a better night’s sleep
Dealing with sarcoma cancer and its treatment can make you feel very tired, but you may still find that you have trouble getting enough quality sleep at night. Try and keep to a regular sleeping routine, and avoid having too many ad-hoc naps during the day.
Many people also find that doing some relaxation exercises and using a sleep balm or spray can help. The Live Better With community recommend Badger Sleep Balm and Cotswold Lavender Slumber Spray to help you relax and drift off.
You can find more tips and advice in the Live Better With Guide to Cancer and Having Difficulty Sleeping.
You can learn more about radiation and chemotherapy treatment with the Live Better With Guide to Radiotherapy and the Live Better With Guide to chemotherapy and managing your side effects.
And you can find a wealth of information and articles on all aspects of living with cancer here.
www.sarcoma.org.uk - Sarcoma UK
www.bcrt.org.uk - Bone cancer research trust
www.macmillan.org.uk - Macmillan cancer support
www.cruk.org - Cancer Research UK
www.clicsargent.org.uk - Clic Sargent
Do you have experience of dealing with sarcoma cancer, or are you looking for tips and advice? Why not join the Live Better With Cancer Community.