What are the symptoms and treatment options for desmoid tumors?

Symptom Database

Desmoid tumors, also known as aggressive fibromatosis, are rare, noncancerous tumors that develop in the connective tissue of the body. These tumors can occur in any part of the body, but are most commonly found in the abdominal wall, shoulder, and thigh. While desmoid tumors are not cancerous, they can be locally aggressive and cause significant pain and discomfort. In this article, we will explore the symptoms and treatment options for desmoid tumors, as well as the causes, prognosis, research, support, and specialists available for this condition.

Symptoms of Desmoid Tumors

The symptoms of desmoid tumors can vary depending on the location and size of the tumor. Some common symptoms include:

  • Pain or discomfort in the affected area
  • A palpable mass or lump
  • Restricted movement or stiffness
  • Changes in bowel or bladder function (if the tumor is located in the abdomen)

It is important to note that desmoid tumors can sometimes be asymptomatic, meaning they do not cause any noticeable symptoms. In such cases, the tumor is often discovered incidentally during a routine medical examination or imaging test.

Treatment Options for Desmoid Tumors

The treatment of desmoid tumors depends on various factors, including the size, location, and aggressiveness of the tumor, as well as the overall health of the patient. The main treatment options for desmoid tumors include:

Watchful Waiting

In some cases, especially when the tumor is small and not causing any symptoms, a watchful waiting approach may be recommended. This involves regular monitoring of the tumor through imaging tests to track its growth and assess the need for further intervention.


Surgical removal of the desmoid tumor is often considered the primary treatment option. However, complete removal of the tumor can be challenging due to its infiltrative nature and proximity to vital structures. In some cases, a wide surgical excision may be performed, which involves removing a margin of healthy tissue around the tumor to reduce the risk of recurrence.

Radiation Therapy

Radiation therapy may be used as an adjunct to surgery or as a standalone treatment for desmoid tumors. It involves the use of high-energy radiation to target and destroy cancer cells. Radiation therapy is particularly useful for tumors that are difficult to remove surgically or have a high risk of recurrence.

Medical Therapy

Medical therapy, such as the use of nonsteroidal anti-inflammatory drugs (NSAIDs), hormonal therapy, or targeted therapies, may be considered for desmoid tumors that are not amenable to surgery or radiation therapy. These medications work by inhibiting the growth of the tumor cells or reducing the production of collagen, which is a major component of desmoid tumors.

Causes of Desmoid Tumors

The exact cause of desmoid tumors is unknown. However, certain risk factors have been identified, including:

  • A history of trauma or surgery in the affected area
  • A family history of desmoid tumors
  • A genetic mutation called the APC gene mutation, which is also associated with familial adenomatous polyposis (FAP)

It is important to note that not all individuals with these risk factors will develop desmoid tumors, and the condition can also occur in individuals with no known risk factors.

Prognosis and Research

The prognosis for desmoid tumors can vary widely depending on various factors, including the location, size, and aggressiveness of the tumor, as well as the response to treatment. Some desmoid tumors may regress spontaneously without any treatment, while others may recur or progress despite treatment.

Research is ongoing to better understand the underlying mechanisms of desmoid tumors and develop more effective treatment strategies. Clinical trials are being conducted to evaluate the efficacy of novel therapies, such as targeted therapies and immunotherapies, in the management of desmoid tumors.

Support and Awareness

Living with a desmoid tumor can be challenging, both physically and emotionally. It is important for individuals with desmoid tumors to seek support from healthcare professionals, support groups, and online communities. These resources can provide valuable information, emotional support, and a sense of community for individuals affected by desmoid tumors.

Increasing awareness about desmoid tumors is crucial to promote early detection, timely intervention, and improved outcomes. Organizations and foundations dedicated to desmoid tumor research and support play a vital role in raising awareness, funding research, and providing resources for patients and their families.

Desmoid Tumor Specialists

When seeking treatment for a desmoid tumor, it is important to consult with healthcare professionals who specialize in the management of this condition. Desmoid tumor specialists, such as surgical oncologists, radiation oncologists, and medical oncologists, have expertise in diagnosing and treating desmoid tumors. They can provide personalized treatment plans based on the individual’s specific needs and circumstances.

In conclusion, desmoid tumors are rare, noncancerous tumors that can cause significant pain and discomfort. The symptoms and treatment options for desmoid tumors vary depending on various factors, and it is important for individuals affected by this condition to seek appropriate medical care and support. Ongoing research and increased awareness about desmoid tumors are essential to improve outcomes and quality of life for individuals living with this condition.

Haroon Rashid, MD
Rate author
Urgent Care Center of Arlington, VA
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