In the latest NCCN Guidelines for Patients®, desmoid tumor experts no longer recommend surgery as the first option to treat most desmoid tumors (except in certain situations). Other care options may be considered first based on the location of the tumor and other factors.³

Results and side effects can vary from person to person. When starting a therapy or care option, it may be helpful to talk about what to expect with your care team. Your doctor can advise you on possible side effects you may experience and potential strategies to help manage them.^11,12

Active Surveillance

The first step for some people may be observation. This may include regular doctor check-ups and frequent imaging tests.³ This will give doctors a chance to understand if the tumor is progressing: if you have growth or change in your tumor and/or symptoms.^11,13,14

If you have symptoms, the tumor grows, and/or if the tumor is in a critical location, your doctor may recommend that you begin treatment.³

Medical Therapy

Medical therapy, also known as systemic therapy, describes treatment with medicines that travel through the bloodstream and can affect cells throughout the body.¹⁵

Your care team may prescribe medical therapies to help shrink and/or stabilize the tumor and manage symptoms.^2,6

Medical therapy is recommended by experts as a first-line active treatment option for desmoid tumors that are growing and/or symptomatic in most tumor locations.^2,3,*

The NCCN Guidelines for Patients recommend the following medical therapy options:^2,3

Surgery

Guidelines from 2 groups of desmoid tumor experts^† do not recommend surgery as the first option for treating desmoid tumors (except in certain situations).^3,6

A team of experts should agree on whether surgery is appropriate. They will assess the tumor size and location, and how symptoms may be affecting daily life.³ There are other important factors to consider:

• During surgery, the surgeon tries to remove the entire desmoid tumor and some surrounding healthy tissue to make sure they removed it all. Doctors call this surrounding area a “clear margin” where no tumor cells are visible⁶
  • Unfortunately, even with a clear margin, sometimes desmoid tumors still come back (recurrence)^17-20
• Completely removing a desmoid tumor and getting a clear margin may be difficult. That’s because desmoid tumors have far-reaching “tendril-like” growths that radiate outward.^21,22
  • If any part of the desmoid tumor is left after surgery (called a “positive margin”), there is a high risk of recurrence ^19,22
• Desmoid tumors can come back after surgery 24%-77% of the time.^23,24 The risk may be higher for people who:
  • Are diagnosed at a younger age¹⁷
  • Have tumors in certain locations (intra-abdominal, chest wall or limbs)¹⁷
  • Have a larger tumor size¹⁷
  • Have already had a desmoid tumor come back after surgery²³
• There is a likelihood of additional surgeries for people who have had desmoid tumor surgery. For some, multiple procedures have led to short- or long-term problems with doing daily activities and symptoms such as pain, weakness, or decreased movement^22,25

Knowledge is power

What questions should you ask your doctor? What are your options or next steps for desmoid tumor care? These are important aspects of making informed decisions for your health. These guides can help:

Doctor Discussion Guide

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Care Options Guide

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“Mine grows and it takes over. I have a whole bunch of empty spaces because they had to take out a bunch of muscle. I just wish that there was something that explained it easily.”

Amy, a real person living with a desmoid tumor

Radiation therapy

Radiation therapy is only recommended for desmoid tumors in the arms, legs, outer torso, head, and neck.^3,9 Radiation therapy can be used where surgery would not be feasible and medications are not available.¹

Cryoablation

Cryoablation uses extreme cold to destroy tumor tissue.^3,26 It can be used for small to medium tumors that are not in the abdomen (belly).¹³ A cold gas freezes the tumor tissue. It is pumped into the tumor through a thin needle. The tissue thaws and the freezing and thawing are repeated several times to destroy the cells.²⁶ Your doctor may recommend other ablation therapies to destroy tumor tissue as well.³

Clinical Trials

Treatments are being studied for desmoid tumors. Talk to your doctor to see if you may be a good candidate for a clinical trial.

“There’s no one-size-fits-all treatment”

Melony, a real person living with a desmoid tumor