Desmoid tumors are growths in the connective soft tissue. These tumors can’t spread throughout the body, but they can be locally aggressive and cause pain and other problems. If you’re diagnosed with desmoid tumor, you may need to manage this condition long term.

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

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

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.

Desmoid Tumors May Require Lifelong Monitoring

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

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

The word “progression” describes how a medical condition advances or gets worse. In the case of desmoid tumor, progression means that the tumor has grown and/or symptoms have changed or worsened. For example, if you’ve been diagnosed with desmoid tumor, your condition might be progressing if you have more pain.

It’s important to tell your healthcare team about any symptoms you’re having. They can determine if new or worsening symptoms might be a sign that your desmoid tumor is progressing or has returned.

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

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 25 percent to 60 percent chance of coming back.

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

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

Living With Desmoid Tumor

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

A desmoid tumor diagnosis can cause a range of emotions. One study found that people with desmoid tumor had high levels of anxiety, depression, and overall poor well-being.

Factors that may affect individuals’ mental health and quality of life with desmoid tumor include:

• Uncertainty about whether a tumor might grow
• Stress about follow-up medical visits
• The challenges of undergoing treatments

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

Resources To Support Your Mental Health

If you’re living with 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 referrals to professionals. This may include social workers, therapists, or counselors.

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

• The Desmoid Tumor Research Foundation offers resources for people with desmoid tumor and their caregivers.
• Rein in Sarcoma connects individuals with a trained volunteer to help them understand their diagnosis.
• Global Genes provides a patient navigation service that can connect you with mental health support, financial resources, and other help.
• You can search a national network of mental health providers on PsychologyToday.com. You can filter by ZIP code, insurance coverage, and more.

Join the Conversation

On MyDesmoidTumorTeam, people share their experiences with desmoid tumors, get advice, and find support from others who understand.

How did you manage your health while navigating desmoid tumor treatment options? Let others know in the comments below.