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 tumorGrowth rate and how invasive it isSymptomsPossible side effectsPreferences, age, and overall health of the patient
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 SwellingNausea or vomiting Insomnia (trouble sleeping)
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 pressureFatigueNausea, vomiting, diarrheaLoss of appetiteRashDry or itchy skinMouth sores
Common side effects of Gleevec include:
Fluid buildupRashNauseaDiarrheaFatigueMinor muscle aches
Common side effects associated with Votrient include:
DiarrheaFatigueDecreased color in the hair or skinHigh blood pressure
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 womenSexual side effects such as decreased libidoMood changes
Those who take Nolvadex are at a higher risk of:
Uterine cancerBlood clotsStrokes
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.
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 dacarbazineDTIC-Dome (dacarbazine), only used in combination with doxorubicinNavelbine (vinorelbine)
Side effects vary based on the type of medication. However, some common side effects from chemotherapy may include:
Decreased appetiteNausea, vomiting, or diarrheaFatigueHair lossIncreased 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.
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 dietSelf-careRelaxation techniques Stress reductionTherapySpiritual 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.
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.
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.
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.
