Desmoid tumors are noncancerous growths that occur in the connective tissue. Desmoid tumors most often occur in the arms, legs and abdomen.

Another term for desmoid tumors is aggressive fibromatosis.

Desmoid tumors that grow can extend to involve nearby tissues and organs, causing signs, symptoms and complications.

Treatment may involve surgery to remove the desmoid tumor, when possible. Sometimes the tumor can't be removed without damaging nearby structures. In these cases, other treatments may be recommended.

  • Teamwork. At Mayo Clinic, surgeons work closely with experts in pathology, radiology, oncology and radiation oncology to care for people with desmoid tumors. Other professionals are included as needed.
  • Experience. Although desmoid tumors are rare, Mayo Clinic doctors have experience diagnosing and treating desmoid tumors.
  • A full range of treatment options to consider. Mayo Clinic doctors will work with you to review all of your treatment options and choose the treatment that best suits your needs and goals. The range of treatments offered to people with desmoid tumors includes surgery, radiation, chemotherapy and other medications.

At Mayo Clinic, we assemble a team of specialists who take the time to listen and thoroughly understand your health issues and concerns. We tailor the care you receive to your personal health care needs. You can trust our specialists to collaborate and offer you the best possible outcomes, safety and service.

Mayo Clinic is a not-for-profit medical institution that reinvests all earnings into improving medical practice, research and education. We're constantly involved in innovation and medical research, finding solutions to improve your care and quality of life. Your doctor or someone on your medical team is likely involved in research related to your condition.

Our patients tell us that the quality of their interactions, our attention to detail and the efficiency of their visits mean health care — and trusted answers — like they've never experienced.

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Diagnosis

Tests and procedures used to diagnose desmoid tumors include:

  • Imaging tests. Mayo Clinic doctors have access to a variety of imaging techniques to help create images that help guide diagnosis and treatment. Technologies used to analyze desmoid tumors include CT and MRI.
  • Removing a sample of tissue for testing (biopsy). To make a definitive diagnosis, your doctor sends a sample of the tumor tissue to a laboratory for testing. There, doctors trained in analyzing body tissues (pathologists) examine the sample to determine the types of cells involved. This information helps guide your treatment.

    In order to obtain a tissue sample, surgeons remove some or all of the tumor during an operation.

Treatment

Treatments for desmoid tumors include:

  • Monitoring the growth of the tumor. If your desmoid tumor causes no signs or symptoms, your doctor may recommend monitoring the tumor to see if it grows. You may undergo imaging tests every few months. Some tumors never grow and may never require treatment.
  • Surgery to remove as much of the tumor as possible. If your desmoid tumor causes signs and symptoms, surgeons work to remove the entire tumor and a small margin of healthy tissue that surrounds it. But sometimes the tumor grows to involve nearby structures and can't be completely removed. In these cases, surgeons remove as much of the tumor as possible.
  • Radiation therapy. Radiation therapy uses high-powered beams, such as X-rays, to kill tumor cells. Your doctor may recommend radiation therapy if you have an increased risk that your tumor will return after surgery.

    Radiation therapy may also be used alone in situations where surgery isn't possible.

  • Chemotherapy. Chemotherapy uses chemicals to kill tumor cells. You may receive chemotherapy as a pill that you swallow or through a vein in your arm. Your doctor may recommend chemotherapy if other treatments haven't helped control your desmoid tumor.
  • Heating or freezing tumor tissue. Ablative therapies use extreme heat (radiofrequency ablation) or cold (cryoablation) to kill tumor cells. In a procedure of this type, a doctor inserts a special probe through the skin and into the tumor.

    To ablate tissue during cryoablation, the cryoprobe freezes the area, causing the surrounding tissue to die. During radiofrequency ablation, doctors use electromagnetic energy that heats the tissue to high temperatures and results in cell death.

  • Other treatments. Several other treatments have shown promise in people with desmoid tumors, including anti-inflammatory drugs, hormone therapies and targeted therapies.

Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people. In most cases, Mayo Clinic doesn't require a physician referral. Some insurers require referrals or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need.

At Mayo Clinic in Arizona, people with desmoid tumors are cared for by experts in general surgery, oncology, radiation oncology and other areas as needed.

For appointments or more information, call the Central Appointment Office at 800-446-2279 (toll-free) 8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday or complete an online appointment request form.

At Mayo Clinic in Florida, people with desmoid tumors are cared for by experts in general surgery, oncology, radiation oncology and other areas as needed.

For appointments or more information, call the Central Appointment Office at 904-953-0853 8 a.m. to 5 p.m. Eastern time, Monday through Friday or complete an online appointment request form.

At Mayo Clinic in Rochester, Minn., people with desmoid tumors are cared for by experts in general surgery, medical oncology, radiation oncology and other areas as needed.

For appointments or more information, call the Central Appointment Office at 507-538-3270 7 a.m. to 6 p.m. Central time, Monday through Friday or complete an online appointment request form.

See information on patient services at the three Mayo Clinic locations, including transportation options and lodging.

Mayo Clinic scientists and researchers are studying new ways to diagnose and treat desmoid tumors. One active area of investigation at Mayo Clinic is the use of percutaneous ablation techniques.

Publications

See a list of publications by Mayo Clinic authors on desmoid tumors on PubMed, a service of the National Library of Medicine.

Research profiles

May 27, 2014