Diagnosis

Tests and procedures typically used to diagnose desmoid tumors include a physical exam, imaging tests and a biopsy.

  • Physical exam. During a physical exam, a healthcare professional examines you to better understand your symptoms.
  • Imaging tests. Imaging tests make pictures of the body. They can show the location and size of a desmoid tumor. Imaging tests used to diagnose a desmoid tumor may include MRI and CT.

  • Biopsy. A biopsy is a procedure to remove a sample of tissue for testing in a lab. For desmoid tumors, the sample typically is collected using a needle to draw out some of the tissue. Sometimes surgery may be needed to remove a tumor for testing.

    In the lab, specialists in analyzing body tissues, called pathologists, look at the tissue sample to examine the types of cells in the tumor and see whether the cells are likely to be aggressive. This information helps guide treatment.

Treatment

Desmoid tumors can be treated with medicine, surgery, radiation therapy and ablation treatments. If a desmoid tumor doesn't cause symptoms, treatment might not be needed. Specific treatment is based on each person's individual situation.

Watching for tumor growth

If a desmoid tumor doesn't cause symptoms, it might not need treatment right away. The healthcare team might watch the tumor over time, to see if it grows. Imaging tests may be done every few months to check the tumor. Some tumors never grow and may not need any treatment. Some tumors may shrink on their own without treatment.

Medicines

Desmoid tumors that grow or cause symptoms might need treatment with medicine. Medicines that help treat desmoid tumors include:

  • Targeted therapy. Targeted therapy uses medicines to attack specific chemicals in the tumor cells. By blocking those chemicals, targeted therapy can cause tumor cells to die. One medicine that works in this way to treat desmoid tumors is nirogacestat (Ogsiveo). This and other targeted therapy medicines help treat desmoid tumors that are growing or causing symptoms.
  • Chemotherapy. Chemotherapy treats the tumor with strong medicines. Chemotherapy might be needed when a desmoid tumor is causing serious symptoms.

Researchers also are looking into other medicines that might be useful in treating desmoid tumors. Some may be available through research studies that test new treatments. These studies are called clinical trials.

Surgery

Surgery may be recommended when a desmoid tumor is causing symptoms or if medicine doesn't control symptoms or stop tumor growth. Surgery often removes all of a desmoid tumor, along with a small amount of healthy tissue around it. But sometimes the tumor grows into nearby structures and can't be completely removed. In those situations, surgeons may remove as much of the tumor as possible.

Radiation therapy

Radiation therapy treats the tumor with powerful energy beams. Radiation therapy may be used to treat a desmoid tumor if a person isn't healthy enough to have surgery or if treatment with medicine hasn't worked.

Ablation treatments

Cryoablation is a treatment that uses extreme cold directly on tumor cells to destroy them. During cryoablation, thin metal probes are placed into the area where the tumor is located. The probes are filled with a gas that freezes nearby tissue. Cryoablation may be used for some smaller desmoid tumors that are not located in the belly.

Other types of ablation using heat or focused energy also may be used to treat desmoid tumors.

Coping and support

With time, you may find what helps you cope with the worries that may come with a desmoid tumor diagnosis. Until then, here are some ideas to help you cope.

Learn enough about desmoid tumors to make decisions about your care

Ask your healthcare team about your tumor, including your test results and treatment choices. As you learn more about desmoid tumors, you may become more confident in making treatment decisions.

Find a good listener

Finding someone who is willing to listen to you talk about your hopes and worries can be helpful as you manage your diagnosis. This could be a friend or family member. A counselor, medical social worker or clergy member also may offer helpful guidance and care.

Connect with others

Other people who've had desmoid tumors may be able to offer you support and insight because they understand what you're experiencing. Ask a member of your healthcare team to help you connect with others through support groups in your community. Find support online through Mayo Clinic Connect, which is a community where you can connect with others for support, practical information and answers to everyday questions.

Preparing for your appointment

Make an appointment with a doctor or other healthcare professional if you have any symptoms that worry you. If your healthcare professional suspects that you might have a desmoid tumor, you may be referred to a doctor who specializes in treating cancer, called an oncologist.

Here's some information to help you get ready for your appointment.

What you can do

  • Be aware of anything you need to do before the appointment. When you make the appointment, ask if there's anything you need to do beforehand, such as not eating or drinking for a certain amount of time.
  • Write down the symptoms you're having. Include any that may not seem related to the reason for which you scheduled the appointment.
  • Write down key personal information, including major stresses or recent life changes.
  • Make a list of all medicines, vitamins or supplements you're taking and the doses.
  • Take a family member or friend along, if possible. Sometimes it can be hard to remember all the information provided during an appointment. Someone who goes with you may remember something that you missed or forgot.
  • Write down questions to ask your healthcare team.

For desmoid tumors, some basic questions to ask your healthcare professional include:

  • What most likely is causing my symptoms?
  • Are there other possible causes for my symptoms?
  • What tests do I need?
  • What are my treatment options?
  • What are the potential side effects of each treatment option?
  • I have other health conditions. How can I best manage them together?
  • Should I see a specialist?
  • Are there brochures or other printed materials I can take with me? What websites do you recommend?

Be sure to ask any other questions you may have.

What to expect from your doctor

Your healthcare professional is likely to ask you several questions, such as:

  • When did your symptoms begin?
  • Are your symptoms always present, or do they come and go?
  • How severe are your symptoms?
  • What, if anything, makes your symptoms better?
  • What, if anything, makes your symptoms worse?
By Mayo Clinic Staff