Desmoid Tumor Treatment

Desmoid tumors are benign (noncancerous) tumors that may grow slowly or become more aggressive and invade nearby structures or tissues. Those with a desmoid tumor will work with a multidisciplinary team to develop a treatment plan. 

The healthcare team may include a variety of professionals such as oncologists, radiologists, surgeons, physician assistants, nurse practitioners, nurses, social workers, pharmacists, and dietitians. Patients participate in this process by asking questions and expressing opinions and feelings about different treatment methods.  

Treatment of a desmoid tumor may involve a combination of active surveillance, surgery, radiation, chemotherapy, or prescription medications. Treatment depends on a variety of factors, including:

  • Location of the tumor
  • Growth rate and how invasive it is
  • Symptoms
  • Possible side effects
  • Preferences, age, and overall health of the patient
Surgeon Talking with Patient

Cavan Images / Getty Images

Active Surveillance

Current guidelines recommend active surveillance or a “watch-and-see approach” for people with asymptomatic (no symptoms) desmoid tumors that are not entangled or pushing on vital organs.

In the past, the first-line treatment for desmoid tumors was surgery. A change in practice resulted from studies comparing previous patients who had surgery vs. patients managed with active surveillance or medications. 

During this wait-and-see approach, the healthcare team will watch the tumor to see if it grows or causes more symptoms. The provider may order imaging or other diagnostic tests every few months to closely monitor the tumor.  

Supportive Care

Along with active surveillance, supportive care or symptom relief is often part of the treatment plan. Supportive care might treat symptoms of the tumor or side effects from treatment such as:

  • Pain 
  • Swelling
  • Nausea or vomiting 
  • Insomnia (trouble sleeping)

Active Surveillance Success

Success rates for active surveillance and medical treatment rely on compliance. In other words, the patient must prioritize follow-up appointments with their healthcare team and take their medications as prescribed. 

Medications

Prescription-Strength Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)

Celebrex (celecoxib) or Tivorbex (indomethacin) are examples of prescription NSAIDs. Your healthcare provider may prescribe NSAIDs when surgery is not an option or in combination with other treatments. The goal is to treat pain and slowly decrease swelling and the tumor. 

Targeted Therapy

Some desmoid tumors need a protein called kinase to grow. Tyrosine kinase inhibitors (TKIs) are a targeted medication therapy that blocks these proteins. They inhibit the spread of the tumor without damaging surrounding healthy cells or tissues. 

TKIs include:

  • Nexavar (sorafenib)
  • Gleevec (imatinib) 
  • Votrient (pazopanib)

While this is not an exhaustive list, below are side effects to report to your healthcare team when taking these medications. 

Some common side effects associated with Nexavar include:

  • Increased blood pressure
  • Fatigue
  • Nausea, vomiting, diarrhea
  • Loss of appetite
  • Rash
  • Dry or itchy skin
  • Mouth sores

Common side effects of Gleevec include:

  • Fluid buildup
  • Rash
  • Nausea
  • Diarrhea
  • Fatigue
  • Minor muscle aches

Common side effects associated with Votrient include: 

  • Diarrhea
  • Fatigue
  • Decreased color in the hair or skin
  • High blood pressure

Rare Side Effects of Gleevec

Rare but serious side effects of Gleevec include bleeding and inflammation of the liver. 

Hormone Therapy

Some types of desmoid tumors feed off of the hormone estrogen. In this case, providers will stop estrogen treatments prescribed for menopause symptoms or birth control. Removing the estrogen attempts to “starve” the tumor. Hormone therapy medications such as Nolvadex (tamoxifen) take this one step further and block the tumor's ability to use estrogen. 

Common side effects of Nolvadex include:

  • Hot flashes 
  • Vaginal discharge in women
  • Sexual side effects such as decreased libido
  • Mood changes

Those who take Nolvadex are at a higher risk of:

  • Uterine cancer
  • Blood clots
  • Strokes

Clinical Trials

Your doctor may suggest clinical trial medications that are undergoing research. For example, nirogacestat is a selective gamma-secretase inhibitor that may soon be an option for adults with desmoid tumors. Researchers estimate completing the clinical trial in the spring of 2023.

Surgeries and Specialist-Driven Procedures 

Surgery

Until around the year 2000, surgical resection was the standard of care for desmoid tumors. Surgery is now often reserved for tumors that produce severe symptoms or problems in the body. 

Both surgical oncologists and orthopedic oncologists specialize in removing desmoid tumors. The operation is performed under general anesthesia. The surgeon will attempt to remove all of the tumor(s), including a small margin of surrounding healthy tissue. 

Desmoid tumors often grow around blood vessels, tissues, ligaments, and organs. They resemble dense scar tissue and can stick to these surrounding structures, making removing the entire tumor more difficult. In this case, they will remove as much as possible and monitor the area closely after surgery. 

Recurrence

It’s essential to continue being monitored after surgery as 20%–30% of desmoid tumors recur (return or come back). 

Cryosurgery 

Cryosurgery uses liquid nitrogen to freeze and kill tumor cells. Studies show it is more effective in treating smaller extra-abdominal (outside the abdomen) tumors that have not invaded other structures. 

Radiofrequency Thermal Ablation

Radiofrequency thermal ablation is less invasive than surgery. Unlike the liquid nitrogen used in cryosurgery, it uses heat to destroy cancer cells. 

Chemotherapy

Chemotherapy is a type of medication routinely used to treat cancer. While desmoid tumors are not cancerous, healthcare providers may prescribe chemotherapy to kill the tumor cells. This may be the best treatment for fast-growing tumors or when surgery isn't an option.  

Types of chemotherapy medications prescribed to treat desmoid tumors include:

  • Trexall (methotrexate)
  • Velban (vinblastine)
  • Doxil (liposomal doxorubicin)
  • Adriamycin, Rubex (doxorubicin), used alone or combined with dacarbazine
  • DTIC-Dome (dacarbazine), only used in combination with doxorubicin
  • Navelbine (vinorelbine)

Side effects vary based on the type of medication. However, some common side effects from chemotherapy may include:

  • Decreased appetite
  • Nausea, vomiting, or diarrhea
  • Fatigue
  • Hair loss
  • Increased risk of infection

Radiation Therapy

Radiation therapy is most often used in addition to another treatment for aggressive tumors. It involves a high dose of radiation to kill tumor cells. Long-term side effects and complications can occur. 

High-Frequency Ultrasound

High-frequency ultrasound is an emerging treatment that targets the tumor without destroying nearby tissue. Clinical trials to test its effectiveness and long-term results began in 2020.

Genetic Counseling and Testing

Genetic mutations or variants can be inherited (familial) or somatic (not hereditary). ​​These mutations can lead to desmoid tumors. The majority of desmoid tumor variants are somatic. However, genetic counselors evaluate the slight chance of a familial connection and may suggest testing for family members if needed.

Colonoscopy

Familial adenomatous polyposis (FAP) is a rare, inherited syndrome. Those with FAP are at a higher risk for desmoid tumors and colon cancer. While it is not a treatment, the healthcare provider may suggest a colonoscopy to screen desmoid tumor patients for polyps or colon cancer.

Home Remedies and Lifestyle 

Diagnosis and treatment of desmoid tumors can create physical, emotional, social, spiritual, and financial concerns. As part of supportive therapy, your team may encourage:

  • A healthy diet
  • Self-care
  • Relaxation techniques 
  • Stress reduction
  • Therapy
  • Spiritual counseling

Home remedies such as herbs, supplements, and vitamins are helpful in many ways. However, they could be harmful, especially in large doses. Check with your healthcare team before taking them because they may interact with your medications.

A Caution About Home Remedies

While home remedies and a healthy lifestyle are valuable and may increase your overall well-being, they should not replace the advice of your healthcare team. 

Over-the-Counter (OTC) Therapies 

Your healthcare provider may suggest OTC (nonprescription) medications to help with symptoms of desmoid tumors. 

Nonsteroidal Anti-Inflammatories (NSAIDs)

NSAIDs can be helpful for pain and swelling. Some NSAIDs require a prescription, as mentioned above. There are also OTC NSAIDs such as aspirin, Advil or Motrin (ibuprofen), and Aleve (naproxen). It’s important to ask your provider which is best for you. They will consider your medications and any health conditions, including pregnancy. 

Aspirin and Bleeding

Aspirin may increase your risk of bleeding, especially when taken frequently or at high doses or in combination with other blood thinners.

Acetaminophen

Tylenol (acetaminophen) is used for fever reduction and pain relief. It is not an NSAID and doesn't cause the stomach upset and bleeding that can occur with NSAIDs. 

Taking too much acetaminophen can be toxic to your liver. The recommended maximum daily dose is 4,000 milligrams per day. However, it’s safest not to exceed 3,000 milligrams per day. For adults over 65, the maximum dose is 2,000 milligrams per day.

Complementary and Alternative Medicine (CAM) 

Alternative Medicine

Alternative medicine is a treatment that replaces conventional healthcare. While scientists are still learning a great deal about alternative therapies, no scientific data supports alternative treatment for desmoid tumors. 

Caution About Alternative Treatments

Conventional medicine plays an essential role in treating desmoid tumors. Alternative therapy should not be a replacement. 

Complementary Medicine 

Complementary medicine combines traditional or conventional medicine. Healthcare providers may suggest the following as part of your treatment plan. These are generally considered safe and may increase your well-being or provide symptom relief:

  • Acupuncture
  • Yoga
  • Meditation
  • Nutritional counseling
  • Mindfulness and stress reduction
  • Massage and reiki
  • Art therapy

Summary

Desmoid tumors are benign tumors that may generally grow slowly, although it is possible for them to become more aggressive and invade nearby structures or tissues. It is important to actively monitor these tumors to ensure they don't become a problem. Desmoid tumors can be treated with supportive care, medications, surgeries and procedures, and OTC therapies. Complementary medicine can be used to assist with pain relief and provide comfort.

Talk to your doctor about the best course of treatment for you and your individual situation.

A Word From Verywell 

When developing a treatment plan, ask your healthcare team questions if anything is unclear. It’s best that you are included in treatment planning so you can make informed decisions about your healthcare plan. You should know what to expect during treatment and the goals or expected outcomes. 

Contact your healthcare team if you experience new symptoms, treatment side effects, changes, or lack of symptom relief. This gives them the opportunity to evaluate or adjust supportive care or your course of treatment.  

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