Angiomyxomas are a rare type of soft tissue tumour (lump). They are not thought of as cancer because they usually grow quite slowly and they don't usually spread to other parts of the body.
What it is
These tumours develop from a type of cell called myxoid cells. They are one type of cell found in the body's connective tissue. These tissues hold organs and other body structures in place. There are two types of angiomyxoma:
- superficial angiomyxoma
- aggressive angiomyxoma
Superficial means near the surface. So this type is generally seen on the skin or just below the surface of the skin. It can affect anywhere on the trunk or lower part of the body, the genitals (penis and vagina), and head and neck.
It occurs most commonly in people who are middle aged and older adults.
Aggressive angiomyxoma tends to grow deeper into the tissue. They can also grow into the tissues around them. But they are very unlikely to spread to other parts of the body.
Aggressive angiomyxoma mostly develops between the legs (perineum) or in the pelvis. The pelvis is the part of the lower abdomen inside your hip bones. Aggressive angiomyxoma mostly affects women who are of childbearing age.
Pain or a feeling of pressure in the area is the most common symptom. But most people don’t have many symptoms.
It can be difficult to diagnose angiomyxoma. These are very rare tumours and they can be mistaken for something else that is much more common. Many people are diagnosed with it when they have surgery for what is thought to be something else.
Tests you may have include:
- an ultrasound scan
- a CT scan
- an MRI scan
The main treatment for both types of angiomyxoma is surgery to remove the whole tumour. Depending on where the tumour is, it may be difficult to completely remove it. These types of tumour can come back in the same place (recur).
Around 3 in 10 (around 30%) of aggressive angiomyxomas come back in the same place. Coping with this can be difficult. In most cases they are treated with surgery again. And if they do come back, it is usually only once.
Another treatment you may have is hormone therapy. Some angiomyxomas are hormone sensitive or hormone dependent. This means that they use hormones to grow. Hormone therapies can slow down or stop the growth of a tumour by either:
- stopping hormones being made or
- preventing hormones from making cells grow and divide
The hormone treatments that you might have include goserelin and tamoxifen.
Your doctor might suggest you have hormone treatment:
- before surgery if you have a large tumour to make surgery easier or
- after surgery to reduce the risk of the tumour coming back
The length of time you need to take it is uncertain. This is a relatively new treatment and some women who have stopped taking it found the tumour grew again.
Decisions about treatment
Because angiomyxoma is so rare, there is less information than for more common conditions. Most of what has been written about angiomyxomas in medical journals describes individual cases.
This makes it difficult for us to generalise here, because so few people have this condition. As with most very rare conditions, you are most likely to get reliable information from your own specialist. They can talk to you about the different treatments and what is the best treatment for you.
You have regular follow up appointments. This is likely to include having MRI scans.
More information about angiomyxoma
It can be difficult coping with a rare condition both emotionally and practically. This is especially so if you have a condition that may come back. Finding out about your condition can help you to feel more in control. Ask your specialist if they have treated other people with angiomyxoma. It might be helpful for you to be put in touch with each other.