Angiomyxomas are a rare type of soft tissue tumour (lump). They are not thought of as cancer (they are benign) because they usually grow quite slowly. They don't usually spread to other parts of the body.
Superficial means near the surface. So this type is most likely to grow on the outside surface of the trunk and lower part of the body, the genitals (penis and vagina), and head and neck.
The same number of men and women develop superficial angiomyxoma. It occurs most commonly in people between the ages of 40 and 60.
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 or in the pelvis. The pelvis is the part of the lower abdomen inside your hip bones. More than 9 out of 10 people (95%) diagnosed with the aggressive type are women. Most are of childbearing age.
Most people don’t have many symptoms. Pain or a feeling of pressure in the area is the most common symptom.
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.
The tests you may have include an ultrasound scan, a CT scan and 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. The medical literature suggests that about 3 out of 10 (30%) aggressive angiomyxoma tumours will come back (recur). Sometimes they can keep coming back. Coping with this can be difficult.
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 cancer cells grow and divide
- 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.
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 will be able to talk to you about the different treatments and what is the best treatment for you.
You will have regular follow up appointments. This is likely to include having MRI scans.
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 may be helpful for you to be put in touch with each other.
You can phone the Cancer Research UK nurses on freephone 0808 800 4040. The lines are open from 9am to 5pm, Monday to Friday. You could also join an online forum. Cancer Chat is Cancer Research UK's online forum. Some of the general cancer organisations also have forums where you can discuss your situation with other patients and relatives.
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