For patients
This area is intended for patients.
Sarcomas
Sarcomas are rare tumours of bone and soft tissue. Sometimes they can be felt as enlarging lumps, and sometimes they are detected when they start to affect the person and are then seen on scans. A lump that should not normally be there is called a tumour, and if it is present in our soft tissues or bone, it is called a sarcoma. It is often said that a lump larger than a golf ball should be referred to a sarcoma service.
How they develop
We understand that sarcoma begins when a previously normal cell in our body develops a spontaneous mistake in DNA located in the centre of the cell (the nucleus). This occurs rarely in the billions of cells in our bodies, but if the mistake occurs in a precise way, then the cells that have the mistake can divide and a lump of cells can appear where they should not. This almost always occurs by accident, as there are frequently no obvious factors in normal daily life that are associated with sarcoma tumour development - for example, cigarette smoking or excessive exposure to sunlight.
As a result, developing sarcoma is frequently no one's fault, as it appears that it is a rare side effect of being human. However, in rare instances exposure to radiation and some chemicals can make some types of sarcoma appear, and sometimes sarcomas can run in families, but these are rare occurrences.
If a person with sarcoma has other family members with related tumours, there is often an inherited mistake in DNA that increases the risk of developing sarcoma in that person. In that circumstance, it is worth being referred to the Genetics team linked to the Sarcoma team for advice on this aspect.
Sarcoma types
The World Health Organization has estimated that there are at least 100 different subtypes of sarcoma that arise in soft tissues of the body (fat, muscle, connective tissues that hold our bodies together, and blood vessels) and at least 30 different types of sarcoma that arise in bone. Many of these are called benign tumours. These have often been present for a long time, but can grow to a large size and still require treatment.
Benign tumours differ from more malignant sarcomas, which are often called high-grade tumours. The high-grade tumours often grow faster and can spread to other sites in the body. For example, one frequent site of spread is the lung.
Diagnosis
If either a lump or tumour is detected, a scan is usually first performed. The types of scans are based on sound, X-rays or detecting the effects of a magnetic field. An ultrasound scan is harmless and is often a very useful scan that provides information on the size, consistency and blood flow to the tumour.
A CT scan is based on short exposure to X-rays and is where you lie on a couch that passes through a large hole in a machine. It provides useful information about deeply placed tumours, for example in the abdomen or the lungs.
An MRI scan is similar to a CT scan, except that the couch passes through a magnet. Although it is noisier than a CT scan, this type of scan is an excellent way to look at sarcomas. Finally, a combined CT scan and special radioactivity scan called a PET scan is increasingly used, again providing more information about how active the tumour might be in taking up glucose (sugar).
Finally, a PET scan (a combined CT scan and special radioactivity scan) may be performed, which again provides more information about how active the tumour might be in taking up glucose (sugar).
After a scan, the usual plan is to obtain a sample of the tumour to look at the cells and detect the consequences of the mistakes in the cells of the tumour. This requires a biopsy, and is normally done with the aid of one of the types of scans described above. Usually, the biopsy should be done in a centre that specialises in the detection, examination and treatment of sarcoma.
Once the material is obtained, it takes the specialist Pathology Laboratory at least a week to process the material to identify what type of sarcoma or other tumour is present. More sophisticated tests can take much longer than this.
As sarcomas are rare, specialist pathologists who are experts in examining sarcoma tissue under a microscope are needed to identify the type, grade and behaviour of the tumour. This information is essential to advise a person of the correct treatment required.
Treatment
The type of sarcoma and where it is determines the treatment required. As these tumours can grow and spread, the first thing to establish after the pathology diagnosis, is whether the tumour has spread to other sites in the body. Again this is done with scans as above. Whether it has either spread or not, for most sarcomas, the main question is whether the tumour can be removed by a team of surgeons. This depends on where it is to start with, and often involves the expertise of several surgeons working together. For example, a tumour surgeon removes the tumour, and a plastic surgeon then joins the tissues together so that they work normally and the scar heals well.
Despite modern surgery, most sarcomas that are higher grade require additional treatment. This is directed at the tumour cell and includes chemical treatments and radiation treatment. Chemical or chemotherapy treatments are sometimes used before and after surgery, and when the sarcoma has spread.
There is a wide variety of types of chemotherapy, some of which require a stay in the hospital, and some are given as day-case treatment. Some of these treatments improve the chances of being cured of the sarcoma. Radiation treatment or radiotherapy aims to destroy any remaining cells after surgery, and is an important and effective treatment that improves the chances of cure. This involves a short daily visit to the nearest radiotherapy centre over a period of several weeks. Finally, radiotherapy can be very helpful in controlling sarcoma that has spread.
Your care
When we first meet you, we explain what we might need to do and what tests might be required. We then arrange these, often on the same day that we meet. We obtain the information we need as quickly as possible, including that from other hospitals. We meet as a team every week. A week or so after your first visit the team discuss the best course of action and treatment. The team members that will be most closely involved then meet you and explain the options, risks and benefits of a course of action. If you need treatment, this starts within a few weeks.
If a complex course of action is required involving several team members, we will arrange for this to be co-ordinated from one clinic, so that you do not need to travel to several places and we can meet you together. We also are keen to involve your family, friends and relatives, as their support is as important as that provided by our nurses. If you have surgery, you may need help for your recovery from our specialist physiotherapists and enablement teams. We aim to tailor all we do around your needs, as these are individual to your type of sarcoma and you as a person.
Support
Your family doctor can help. Although your family doctor or GP may not see very many cases of sarcoma in their working life, they understand the effects of such a condition and its treatments on your health and wellbeing. We communicate your information to your doctor by letter every time you are seen, and often also by a phone call. Your family doctor is a very important member of our team and individual to you. One can never underestimate what even the smallest potential problem might have on how you feel.
One way we can help you is to ensure that you can communicate directly with team members and their support teams even while you are at home. This might include ward nurses, doctors, carers, physiotherapists, psychologists, managers and coordinators that help us run the service. Your district nurses are also essential in coordinating what might be helpful closer to home, such as home care, and local cancer nurses (e.g. MacMillan Cancer Support, Marie Curie Cancer Care). Finally, in Oxford we have the backup of a very large healthcare team, and we constantly call on their help for specific problems.
Leaflets
Please visit the following websites for information on your diagnosis:
Publications Archives | Sarcoma UK
Downloadable Information | Bone Cancer Research Trust
Teenage and Young Adult Cancer Services
If you are a teen or young adult looking for more information, please visit:
Teenage and Young Adult
Links
Last reviewed:13 May 2024