Most desmoid tumors are not life-threatening.² In rare instances, desmoid tumors can be life-threatening depending on where they’re located, how they grow, and your overall health.^3,4 Living with a desmoid tumor may include ongoing care from a health care team.²

After you’ve been diagnosed with a desmoid tumor, you might work with a team of desmoid tumor experts to develop a plan to manage your tumors and potential symptoms, such as pain or loss of function.¹ Your care team might include desmoid tumor specialists, such as a medical oncologist (an expert specializing in treating tumors), a radiation oncologist, a surgical oncologist, and other medical professionals like nurses.^2,5

Desmoid tumors may not need to be treated. There’s a 20 percent to 30 percent chance that desmoid tumors will shrink on their own without any medical intervention.⁶

Desmoid Tumors May Require Lifelong Monitoring

Desmoid tumors may require long-term monitoring, and for some people, living with desmoid tumors can be like living with a chronic illness.⁷

After diagnosis, people with desmoid tumors may undergo monitoring, or “active surveillance,” with their health care team. This means that scans may be completed at defined intervals to assess the size of your tumor. In addition to doing scans, your health care provider will talk to you about symptoms like pain.⁶

The word “progression” refers to how a medical condition advances or gets worse.⁸ In the case of desmoid tumors, progression means that your tumor has gotten bigger and/or that your symptoms have changed or worsened.⁵ For example, if you have been diagnosed with a desmoid tumor, your condition might be progressing if you are experiencing more pain or more difficulty with movement or other daily activities.²

It’s important to tell your health care team about any symptoms you may be experiencing so they can determine if those that are new or worsening might be an indication that your desmoid tumors are progressing or have returned.⁵

If your tumor is growing quickly, your symptoms worsen, or your tumor is in a critical part of the body, your care team may recommend beginning treatment.⁹ Experts no longer recommend surgery as the first choice to treat desmoid tumors in most situations. Your health care team may recommend other care options first based on the location of your desmoid tumor and other factors.⁵

Desmoid Tumors Have a High Chance of Recurrence After Surgery

Desmoid tumors may recur, or come back, after they’ve been surgically removed. After surgery, desmoid tumors have a 24 percent to 77 percent chance of recurrence.^10-12

The possibility that a tumor could return can cause anxiety for some people with desmoid tumors.⁷

If you’ve had surgery to remove desmoid tumors, you’ll likely have follow-up appointments to check for tumor recurrence.⁵

Living With a Desmoid Tumor

In addition to treating your desmoid tumor and related symptoms, it’s important to take care of your mental and emotional health.²

A desmoid tumor diagnosis can cause a range of emotions.⁷ A study published in 2020 found that people with desmoid tumors experienced high levels of anxiety, depression, and overall poor well-being.⁷

Uncertainty about whether a tumor might grow, stress about follow-up medical visits, and the challenges of undergoing treatments are all factors that may affect individuals’ mental health and quality of life.⁷

Although aspects of life with desmoid tumors may cause stress, there are resources to help you.

Resources To Support Your Mental Health

If you’re living with a desmoid tumor, the important thing to know is that you’re not alone. You can connect with others living with the condition at MyDesmoidTumorTeam or through other support groups.

Reach out to family and friends, and be honest with them about what you’re going through. Don’t be afraid to ask for help.

You may also want to speak with a professional to help support your mental well-being. Ask your oncologist or other members of your care team for recommendations for professionals like a social worker, a therapist, or a counselor.¹³

Many organizations provide mental health resources and other support for people with desmoid tumors, including the following:*

• The Desmoid Tumor Research Foundation offers resources for people with desmoid tumors and their caregivers.¹⁴
• Rein in Sarcoma connects individuals with a trained volunteer to help them understand their diagnosis.¹⁵
• Global Genes provides a patient navigation service that can connect you with mental health support, financial resources, and other help.¹⁶
• The National Institute of Mental Health provides educational resources on mental health topics and resources for finding help.¹⁷
• SAMHSA.gov is another government resource that can connect you with resources for support.¹⁸
• You can search a national network of mental health providers on PsychologyToday.com. You can filter by zip code, insurance coverage, and more.¹⁹

*These links are provided to help patients find more information about desmoid tumors, but inclusion on this list does not represent an endorsement or a recommendation.

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