Desmoid tumors are noncancerous growths that occur in the connective tissue. Desmoid tumors most often occur in the abdomen, arms and legs.
Another term for desmoid tumors is aggressive fibromatosis.
Some desmoid tumors are slow growing and don't require immediate treatment. Others grow quickly and are treated with surgery, radiation therapy, chemotherapy or other drugs.
Desmoid tumors aren't considered cancers because they don't spread to other areas of the body. But they can be very aggressive, acting more like cancers and growing into nearby structures and organs. For this reason, people with desmoid tumors are often cared for by cancer doctors.
Desmoid tumor symptoms differ based on where the tumors occur. Desmoid tumors most often happen in the abdomen, arms and legs. But they can form anywhere in the body.
In general, signs and symptoms include:
Make an appointment with your doctor if you have any persistent signs or symptoms that worry you.
It's not clear what causes desmoid tumors.
Doctors know these tumors form when a connective tissue cell develops changes in its DNA. A cell's DNA contains the instructions that tell a cell what to do. The changes tell the connective tissue cell to multiply rapidly, creating a mass of cells (tumor) that can invade and destroy healthy body tissue.
Factors that may increase the risk of desmoid tumors include:
Tests and procedures used to diagnose desmoid tumors include:
Removing a sample of tissue for testing (biopsy). To make a definitive diagnosis, your doctor collects a sample of the tumor tissue and sends it to a lab for testing. For desmoid tumors, the sample can be collected with a needle or with surgery, depending on your particular situation.
In the lab, doctors trained in analyzing body tissues (pathologists) examine the sample to determine the types of cells involved and whether the cells are likely to be aggressive. This information helps guide your treatment.
Treatments for desmoid tumors include:
Chemotherapy and other medications. Chemotherapy uses strong drugs to kill tumor cells. Your doctor may recommend chemotherapy if your desmoid tumor is growing quickly and surgery isn't an option.
Several other drug treatments have shown promise in people with desmoid tumors, including anti-inflammatory drugs, hormone therapies and targeted therapies.
With time, you'll find what helps you cope with the uncertainty and distress of being diagnosed with a rare tumor. Until then, you may find that it helps to:
Make an appointment with your doctor if you have any signs or symptoms that worry you. If your doctor suspects that you might have desmoid tumor, he or she may refer you to a doctor who specializes in treating cancer (oncologist).
Here's some information to help you get ready for your appointment.
When you make the appointment, ask if there's anything you need to do in advance, such as fasting before having a specific test.
Gather the medical records that pertain to your condition and bring them to your appointment. If you're seeing a new doctor, ask your previous doctor to forward files and other information, such as glass slides that contain tissue samples, to your new doctor.
Make a list of:
Consider bringing a family member or friend to help you remember the information you're given.
For desmoid tumors, some basic questions to ask your doctor include:
Don't hesitate to ask other questions.
Your doctor is likely to ask you several questions, such as: