Diagnosis
How is a desmoid tumour diagnosed?
Desmoid tumours are rare tumours and require multidisciplinary treatment in a centre of expertise specialising in soft tissue tumours. Therefore, if a soft tissue tumour is suspected, your doctor should refer you to a centre of expertise. Below you can find which centres you can go to. Click on the photos to go to the website.
At first, the doctor will not be able to tell you for sure which tumour you are dealing with. This is because a malignant tumour may look the same as a desmoid tumour. First, the doctor will question and examine you in detail. This can already give an indication about the aggressiveness of the tumour, where exactly it is located and whether any causes can be found.
Afterwards, a number of investigations (scans) to get an idea of what type of tumour it might be and where exactly it is located (against nerves or blood vessels, in which muscles, etc.).
What imaging is possible?
After an ultrasound, one will almost always see a MRI or CT scan of the body part with the tumour to check the local extensiveness.
CT scan
A CT scan is an examination that uses X-rays to image the inside of the body. This examination is usually painless. When you receive an injection of contrast medium, you will feel a sting, for example in your hand or in a joint.
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Depending on the body part to be imaged, you will be asked to remove certain garments and jewellery or other metal objects. You will then be taken to the table to make the images. You will be asked to assume certain positions; it is important to follow these instructions carefully and not to move during the recording. If certain positions do not work for you or are too painful, it is important that you tell the radiology nurse. After the recordings, you can get dressed again and go home. You will be given a code or report of the examination: keep this and give it to your doctor.
MRI
An MRI scan is an examination that uses magnetic waves to image the inside of the body. This examination is usually painless. When you receive an injection of contrast medium, you will feel a sting, for example in your hand or in a joint.
Read more
Depending on the body part to be imaged, you will be asked to remove certain garments and jewellery or other metal objects. You will then be taken to the table to make the images. You will be asked to assume certain positions; it is important to follow these instructions carefully and not to move during the recording. If certain positions do not work for you or are too painful, it is important that you tell the radiology nurse. After the recordings, you can get dressed again and go home. You will be given a code or report of the examination: keep this and give it to your doctor.
A CT scan mainly shows the difference between bone and different tissue structures. For desmoid tumours located in the abdominal cavity (intra-abdominal), a CT scan is usually often used. This then provides a good image of the normal abdominal organs and location of the tumour. If the tumour is outside the abdominal cavity then an MRI is preferred.
It is essential that these examinations can be done before cutting into the tumour so as not to distort the images, which can make it more difficult to characterise the tumour. On the MRI, one can also see if some zones of a desmoid tumour have become inactive. These zones then look very much like an old scar (colour less intense), and do not grow any further.
Furthermore, from the scan images, doctors can see by which route and where in the tumour it is best to take a tissue sample. This is then discussed at the multidisciplinary consultation (MOC consultation).
How does the biopsy take place?
To determine the exact type of soft tissue tumour involved, a tissue sample must be examined by the anatomic pathologist. To obtain such a tissue sample, a biopsy is usually scheduled. A biopsy can be done either open via minor surgery or closed via puncture.
Does such a biopsy carry any risks?
A biopsy is always a calculated risk. It is popularly said that once a tumour has 'seen air', the patient is lost. This is not true. A biopsy does allow cells from the tumour to remain in the biopsy pathway.
A biopsy should be performed correctly to avoid problems later on. Since the biopsy must be removed with the final removal of the tumour, it is essential that the doctor already takes into account the later surgery at the time of biopsy.
Inflammation of a biopsy wound should be avoided at all costs. The doctor will also take maximum precautions to prevent a large haemorrhage, for example by inserting a tube (called a drain) to bring out the blood. Often, a pressure bandage is also applied temporarily.
What happens after the biopsy?
The tissue sample is immediately sent to the lab at a specialised centre for targeted examination. This examination is very extensive and can take several days (up to 10 days) before a final result is available. This period of waiting is a very stressful time for you and your loved ones because you do not yet know where you stand. This period is kept as short as possible but is necessary to be absolutely certain of the diagnosis.
The results are discussed again in the multidisciplinary team and a treatment plan is drawn up. Your treating physician will discuss the results and the treatment plan with you and your relatives. This plan is a proposal: as a patient, you should also have a say in the treatment. Feel free to ask questions, ask for clarification where necessary, or ask for a second appointment if it all gets a bit too much so that you can process the information obtained.
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