If you’re living with desmoid tumors, you may have many questions: What happens if the tumors come back or get worse? Will they keep growing? Will my symptoms get better or worse? If the tumors were removed or went away, could they come back?

In this article, we’ll answer your questions about desmoid tumor progression. We’ll also share information about when a desmoid tumor returns after treatment, which is called recurrence.

🗳️ Have you noticed changes to your desmoid tumor over time?

Yes, and they’ve been significant.

Yes, but they’ve been minor.

No, I haven't noticed any changes.

Not sure/Something else

Thanks! You've successfully submitted your vote.

Sign up to view the results!

Continue with Facebook

Continue with Google

Continue with Email

By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.

Already a member? Log In

What Is Desmoid Tumor Progression?

Desmoid tumors are also known as aggressive fibromatosis. These are growths that form in the body’s soft tissues. Desmoid tumors can form in different parts of the body, including the abdomen, legs, upper arms, head, and shoulders.

Desmoid tumors don’t spread to distant places within the body. But they’re often described as “locally aggressive.” That’s because they can spread, attach to, and wrap around surrounding tissues and structures.

When desmoid tumors continue growing or symptoms get worse, it’s called progression.

How Is Progression Determined?

Some people with desmoid tumors might not begin treatment right away. Instead, their medical team may recommend active surveillance if their tumor is stable and isn’t causing pain.

Active surveillance means going to regular medical appointments so your care team can check for changes in your tumor or symptoms. How often you have appointments depends on several factors. These may include where your tumors are, the risk of the tumors progressing, and whether you have any symptoms of progression. If your tumors progress, your healthcare team may recommend starting active treatment.

Your medical team may consider several factors when determining if your tumor has progressed. These include:

• Imaging with a computed tomography (CT) or magnetic resonance imaging (MRI) scan to show whether the tumor has increased in size
• Worsening symptoms, such as pain, limited range of motion, reduced physical function, and trouble getting around
• Changes in your daily functioning, such as whether simple activities or movements are becoming harder

Tracking Your Symptoms

Let your healthcare team know about any symptoms you’re having. New or changing symptoms could be a sign that your tumor is progressing.

It can be helpful to track your symptoms so that you have a record of how you’ve been feeling. Tracking how often symptoms happen, when they get better or worse, and what treatments you’ve tried can help your medical team decide what to do next.

You can keep track in a notebook or digitally, and there are many symptom-logging apps that you might find helpful. If your desmoid tumor is progressing, talk with your healthcare team about next steps. There are several treatment options they may recommend, which are discussed below.

Can Desmoid Tumors Come Back?

Your care team may recommend active treatment if your tumor is progressing. Treatment options are discussed in more detail below. Tumors can shrink with treatment, and sometimes even without being treated.

There’s still a chance that your tumor could grow again after shrinking or going away completely. This is called a local recurrence and is common after surgery.

For example, desmoid tumors have a 25 percent to 60 percent chance of recurring if surgically removed.

Certain factors make it more likely that a tumor will come back after surgery, such as if you:

• Are diagnosed at a younger age
• Have tumors in certain locations (the intra-abdominal area, chest wall, or arms or legs)
• Have a larger tumor

Desmoid tumor specialists don’t usually recommend surgery as the first treatment for most desmoid tumors unless a team of doctors agrees it’s the best option.

Ongoing Care for Desmoid Tumors

If your doctor finds a suspicious mass or area, they might suggest taking a biopsy (tissue sample) to look at under a microscope. A biopsy is needed to confirm a desmoid tumor diagnosis. Your doctor may also discuss your health history and whether you have any risk factors for desmoid tumor, such as familial adenomatous polyposis, a rare inherited condition that causes many polyps to grow in the colon.

Managing your desmoid tumors may require ongoing care, even if you’ve received medical treatment. If your desmoid tumors come back or start growing again after being stable for a long time, you may still need regular appointments with your care team.

Your doctor may want to monitor your health and see if your tumors have grown or returned. They may also use imaging tests to check for new tumor growth.

Your medical team can help you if you’re having ongoing symptoms related to your desmoid tumors. For example, desmoid tumors affecting your arms and legs may make it harder to move. Your team may recommend rehabilitation therapy after treatment to help you move more easily and improve your quality of life.

Treatment After Progression or Recurrence

If your desmoid tumors progress or come back, or if you have new or worsening symptoms, your care team can talk with you about other treatment options. They may recommend a new treatment strategy, such as chemotherapy, targeted therapies, radiation therapy, surgery, a localized therapy like ablation, or nonsteroidal anti-inflammatory drugs for pain. Desmoid tumor treatment will depend on your health needs and goals.

Your desmoid tumor specialist can help you understand the benefits and risks of the treatment plan options available to you. They can also help create a follow-up plan based on your needs.

Your Mental Well-Being

It can be upsetting to learn that your desmoid tumor is progressing or has returned. Your healthcare providers can help connect you with professionals who can provide emotional support. Some of these resources may be available through your treatment center. The Desmoid Tumor Research Foundation is one of many organizations that provide mental health resources for people living with desmoid tumors.

Join the Conversation

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

Did your desmoid tumor come back or progress after treatment? Let others know in the comments below.