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A woman in a white dress holding one hand to her stomach, as if experiencing mild pain.

What Are Desmoid Tumors?

Everything You Need to Know About Desmoid Tumors

Desmoid tumors, also known as aggressive fibromatosis, are rare, non-metastatic but locally invasive soft tissue tumors. Despite their benign classification, meaning they do not spread to other parts of the body, desmoid tumors can be quite aggressive, infiltrating surrounding tissues and causing significant morbidity. One treatment option for them is Ogsiveo (nintedanib). It's a medication that blocks certain proteins that help the tumor grow. Studies have shown that Ogsiveo can help stop the tumor from getting bigger and sometimes even make it smaller.

Foods and Drinks to Avoid

If you've been diagnosed with desmoid tumors, you should avoid these foods and drinks:

  • Sugary beverages: Sugary drinks can lead to weight gain and provide little nutritional value.
  • Processed foods: Foods high in preservatives, artificial colors, and flavors should be limited as they can contribute to overall inflammation.
  • Alcohol: Alcohol can interfere with the metabolism of medications and can also exacerbate inflammation and digestive symptoms.
  • High-fat foods: Excessive intake of fatty foods can contribute to weight gain and inflammation, potentially worsening symptoms.

Signs and Symptoms of Desmoid Tumors

The presentation of desmoid tumors can vary widely depending on their location. Common signs and symptoms include:

  • Pain and discomfort: Tumors can cause localized pain or discomfort due to their size and the pressure they exert on surrounding tissues.
  • Swelling or lump: A noticeable mass or lump may develop in the affected area, which can be palpable and sometimes visible.
  • Limited mobility: Tumors located in the limbs can restrict movement and functionality.
  • Digestive issues: Tumors within the abdominal cavity can cause gastrointestinal symptoms such as bloating, pain, and bowel obstruction.
  • Nerve compression: Tumors pressing on nerves can result in numbness, tingling, or weakness in the affected area.

Treatment Options

The treatment of desmoid tumors can be complex and varies based on the tumor’s size, location, growth rate and the patient’s overall health. Options include:

1. Watchful Waiting

In some cases, especially when the tumor is asymptomatic and not growing, doctors may recommend a period of observation. Regular monitoring through imaging tests helps to track the tumor’s behavior.

2. Surgery

Surgical removal of the tumor is often considered, particularly if the tumor is causing significant symptoms or if it is located in an easily accessible area. However, surgery can be challenging due to the invasive nature of desmoid tumors, and recurrence is common.

3. Pharmacological Treatments

Several medications can be used to manage desmoid tumors:

  • Nonsteroidal anti-inflammatory drugs (NSAIDs): Medications such as aspirin or ibuprofen can help reduce pain and inflammation.
  • Hormonal therapy: Since estrogen can promote the growth of desmoid tumors, anti-estrogen medications like tamoxifen may be prescribed.
  • Chemotherapy: In cases where tumors are aggressive or unresectable, chemotherapy drugs may be used to shrink the tumor.

4. Targeted Therapy

Targeted therapies focus on specific molecular pathways involved in tumor growth. One such medication is Ogsiveo (nintedanib), which inhibits the activity of multiple tyrosine kinases involved in tumor growth and angiogenesis. Clinical studies have shown that Ogsiveo can help stabilize tumor growth and, in some cases, reduce tumor size.

5. Radiation Therapy

Radiation therapy may be used in certain cases, especially when surgical options are limited. However, its use is controversial due to potential long-term side effects.

6. Cryoablation and Radiofrequency Ablation

These minimally invasive procedures involve using extreme cold or heat to destroy tumor cells. They are often considered for tumors that are not easily accessible by surgery.

7. Integrative Approaches

Complementary therapies such as physical therapy, acupuncture and nutritional counseling can help manage symptoms and improve quality of life. Stress management techniques, including mindfulness and yoga, can also be beneficial.

Final Notes

Desmoid tumors, though benign, can significantly impact a patient’s quality of life due to their aggressive nature. Early diagnosis and a multidisciplinary approach to treatment are crucial. While surgical and pharmacological options like Ogsiveo offer hope, lifestyle and dietary considerations also play an important role in managing this complex condition.

Working closely with a healthcare team ensures the best possible outcomes for those affected by desmoid tumors.