Desmoid Tumor

A desmoid tumor is a tumor of the tissue that surrounds muscles, usually in the abdomen. A desmoid tumor rarely spreads to other parts of the body. It may be called aggressive fibromatosis when the tumor is outside of the abdomen. Because there is a tendency for desmoid tumors to reoccur, the treatment of these relatively rare tumors is challenging.

Desmoid tumors most commonly appear in young women during or after pregnancy. Twice as common in females than in males, desmoid tumors are also common in persons aged ten-forty years. However, they do occur in young children and older adults.

Desmoid Tumor Topics

Risks Factors for Desmoid Tumor

Anything that increases your risk of getting a disease is called a risk factor. Having a risk factor does not mean that you will get cancer; not having risk factors doesn't mean that you will not get cancer.

The cause of desmoid tumors is uncertain but these tumors most commonly appear in young women during or after pregnancy. They regress during menopause and after tamoxifen treatment. Desmoid tumors may also regress after exposure to oral contraceptives.

Symptoms of Desmoid Tumor

A sarcoma may appear as a painless lump under the skin. Sarcomas that begin in the abdomen may not cause signs or symptoms until they get very big. As the sarcoma grows bigger and presses on nearby organs, nerves, muscles, or blood vessels, signs and symptoms may include:

  • Pain
  • Trouble breathing

Other conditions may cause the same signs and symptoms. Check with your doctor if you have any of these problems.

Diagnosis of Desmoid Tumor

If your doctor thinks you may have a desmoid tumor, a biopsy will be performed. There are three types of biopsy that may be used:

  • Incisional biopsy - the removal of part of a lump or a sample of tissue.
  • Core biopsy - the removal of tissue using a wide needle.
  • Excisional biopsy - the removal of an entire lump or area of tissue that doesn’t look normal.

Samples will be taken from the primary tumor, lymph nodes, and other suspicious areas. A pathologist views the tissue under a microscope to look for cancer cells and to find out the grade of the tumor. The grade of a tumor depends on how abnormal the cancer cells look under a microscope and how quickly the cells are dividing. High-grade tumors usually grow and spread more quickly than low-grade tumors.

Pathologists at DF/BWCC are among the best and most experienced in the world with special expertise in providing an accurate diagnosis for complex cases. In many instances when asked to review a case to provide a second opinion, the diagnosis and treatment plan is changed.

Stages of Desmoid Tumor

The process used to find out if cancer has spread to other parts of the body is called staging. The stage is determined from the results of physical exams, imaging tests and biopsies that have been done. Learn more about the stages of desmoid tumor.

Treatment Options for Desmoid Tumor

Primary surgery with negative surgical margins is the most successful primary treatment modality for desmoid tumors. Surgical oncologists at BWH take a conservative surgical approach with these tumors with close follow-up by the medical oncology team.

Radiation therapy may be used as a treatment for recurrent disease or as primary therapy to avoid disfiguring surgery. It may be used postoperatively, preoperatively, or as the sole treatment.

Pharmacologic therapy with antiestrogens and prostaglandin inhibitors may also be used.

What You Should Expect

You will receive a thorough diagnostic examination to determine your course of treatment. Careful monitoring and the involvement of an experienced surgical oncologist are important to the successful outcome for patients with desmoid tumors.

If you are having surgery or a procedure, you will likely be scheduled for a visit to the Weiner Center for Preoperative Evaluation for pre-operative information and tests.

The day of surgery, you will be cared for in the operating room by surgeons, anesthesiologists and nurses who specialize in surgery for patients with desmoid tumors. After surgery, you will recover in the post-surgical care unit where you will receive comprehensive care by an experienced surgical and nursing staff.

Learn more about your hospital stay and returning home.

Multidisciplinary Care

The Center for Sarcoma and Bone Oncology at Dana-Farber/Brigham and Women’s Cancer Center provides advanced and innovative multidisciplinary care for patients with sarcoma, including desmoid tumors. Our treatment team includes surgical oncologists, medical oncologists, radiologists, plastic surgeons, nutritionists, pathologists and anesthesiologists. In addition, patients have full access to BWH’s world-renowned academic medical community with its diverse specialists and state-of-the-art facilities.

Resources

Learn more about desmoid tumor treatment at DF/BWCC.

Visit the Kessler Health Education Library in the Bretholtz Center for Patients and Families to access computers and knowledgeable staff.

Visit the Weiner Center for Preoperative Evaluation.

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