KidsMD Health Topics

Desmoid Tumor

  • A Desmoid tumor develops in the fibrous tissue that forms tendons and ligaments.

    • most often it occurs in the arms, legs or midsection
    • it can also occur in the head and neck
    • desmoid tumor is also called "aggressive fibromatosis"
    • is benign and does not spread to other parts of the body
    • can adhere to and intertwine with surrounding structures and organs, which makes it difficult to control

    Research on Desmoid tumors

    Dana-Farber/Boston Children’s Cancer and Blood Disorders Center researchers are conducting numerous research studies that will help clinicians better understand and treat Desmoid tumors. Types of treatment currently being studied include:

    • Angiogenesis inhibitors - These substances may be able to prevent the growth of tumors by blocking the formation of new blood vessels that feed the tumors.
    • Chemotherapy agents - Researchers are testing which chemotherapy drugs, or combination of drugs, are most effective in treating Desmoid tumors.

    Contact Us

    Boston Children's Hospital
    300 Longwood Ave
    Fegan 2
    Boston MA 02115 

    617-355-6021
    fax: 617-730-0456 

  • What causes Desmoid tumors?

    No one knows the exact cause of Desmoid tumors. Researchers have found that Desmoid tumors may occur in patients who have a history of polyposis coli, a hereditary colon cancer syndrome.

    What are the symptoms of a Desmoid tumor?

    Because Desmoid tumors affect tissue that is elastic and easily moved, a tumor may exist for a long time before being discovered, growing large and pushing aside surrounding tissue.

    Each child may experience symptoms differently, but here's a list of the most common symptoms of Desmoid tumors:

    • a painless swelling or lump
    • pain or soreness caused by compressed nerves or muscles
    • pain and obstruction of the bowels
    • limping or other difficulty using the legs, feet, arms or hands

    The symptoms of Desmoid tumors may resemble other conditions or medical problems, so you should always talk to you child's doctor for a diagnosis.

  • How is a Desmoid tumor diagnosed?

    In addition to a complete medical and physical examination, the most conclusive diagnostic procedure for Desmoid tumor is a biopsy, a tissue sample from the tumor taken through a simple surgical procedure.

  • What's the treatment for a Desmoid tumor?

    Treatment depends on the extent of the problem and your child's overall health and medical history.

    Treatment your doctor recommends may include:

    • Surgery - Surgical removal of your child's tumor by a surgeon is the primary treatment; and because Desmoid tumor rarely metastasizes, surgery alone is often the only treatment. However, Desmoid tumors often return, so sometimes more than one surgery is needed.
    • Anti-inflammatory medication - Given to help manage pain and swelling. In some cases these medications will cause the tumor to slowly shrink.
    • Radiation therapy - Using high-energy rays (radiation) from a specialized machine to damage or kill cancer cells and shrink tumors; radiation is used alone or in conjunction with surgery.
    • Hormone therapy - Because some hormones seem to increase the growth of Desmoid tumors, anti-hormonal medications are sometimes used in treatment.
    • Chemotherapy - If surgeons are unable to remove your child's tumor because of the size or location, researchers are testing some types of chemotherapy to reduce the tumor

    What is the recommended long-term care for children treated for Desmoid tumors?

    Children should visit a survivorship clinic every year to:

    • manage disease complications
    • screen for early recurrence of cancer
    • manage late effects of

    A typical follow-up visit may include some or all of the following:

    • a physical exam
    • laboratory testing
    • imaging

    Through the David B. Perini, Jr. Quality of Life Clinic at Dana-Farber Cancer Institute, childhood cancer survivors receive a comprehensive follow-up evaluation from their cancer care team.

    • Our childhood cancer survivorship clinic is held weekly.
    • In addition to meeting with your pediatric oncologists, your child may see one of our endocrinologists, cardiologists, neurologists, neuro-psychologists or alternative/complementary therapy specialists.

           We also offer the following services:

    • patient and family education
    • psychosocial assessment
    • genetic counseling
    • reproductive and fertility evaluation and counseling
    • opportunities to speak with other childhood cancer survivors
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  • International: +1-617-355-5209
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