What Is Desmoid Tumor Progression?

Desmoid tumors — also known as aggressive fibromatosis — are growths that form in the body’s soft tissues. Desmoid tumors can grow throughout the body. Possible locations include the abdomen, legs, upper arms, head, and neck.¹

Desmoid tumors do not spread to distant places within the body.¹ However, they’re often described as “locally aggressive” because their “tendril-like” growths can attach to and wrap around surrounding tissues and structures.^2,3

When desmoid tumors continue growing or symptoms get worse, it’s known as progression.⁴

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 them pain.

Active surveillance consists of medical appointments on a predetermined schedule to check for any changes to your tumor or your symptoms. How often you have appointments will depend on where your tumors are located, the risk of the tumor progressing, and whether you have any symptoms that suggest your tumor is progressing. If your tumors progress, your health care team may recommend starting active treatment.⁴

Your medical team may consider several factors when determining if your tumor has progressed, including:

• Imaging with a CT scan or MRI showing whether the tumor has increased in size⁴
• Worsening symptoms, such as pain, fatigue, limited range of motion or physical function, and impaired mobility^5,6
• Changes to your functioning, such as whether simple activities or movements are becoming more difficult⁶

Tracking Your Symptoms

It’s important to let your health care team know about any symptoms you’re experiencing. New or changing symptoms could be a sign that your tumor is progressing.⁴

It can be helpful to track your symptoms so that you have a record of how you’ve been feeling. Tracking how often the symptom occurs, when the symptom feels better or worse, and any therapies you have used can be shared with your medical team to help determine next steps in your treatment journey.⁷ You can keep track in a notebook or digitally, and there are many symptom-logging apps available that you might find helpful.⁸ If your desmoid tumor is progressing, ask your health care team for guidance. There are various treatment options that they could recommend, discussed below.

Can Desmoid Tumors Come Back?

Your care team may recommend active treatment if your tumor is progressing, which is discussed in more detail below.⁵ Tumors can shrink or become inactive with treatment. You might still have a lump even if your tumor is inactive.⁹

There is still a chance that your tumor could grow again after it becomes inactive, or even if it completely goes away or is removed. This is known as a local recurrence, and it can be common following surgery.⁹

For example, desmoid tumors have a 24 percent to 77 percent chance of recurring if surgically removed.^10-12

Certain factors make it more likely that a tumor will come back after surgery, such as if you¹³:

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

Guidelines from the National Comprehensive Cancer Network and the Desmoid Tumor Working Group, two groups of desmoid tumor experts, do not recommend surgery as the first option for treating most desmoid tumors, unless agreed upon by a team of experts.^4,6

Ongoing Care for Desmoid Tumors

If your doctor finds a suspicious mass or area, they might suggest taking a tissue sample (biopsy) to look at under a microscope. A biopsy is needed to confirm a desmoid tumor diagnosis.⁹ Your doctor may also discuss your health history and if you have any risk factors for desmoid tumor, such as familial adenomatous polyposis (FAP).⁵

Managing your desmoid tumors may require ongoing care, even if you’ve received medical treatment.⁴ If your desmoid tumors recur or progress after being stable or inactive for an extended time, you may also continue to have regular appointments with your care team.^4,9

Your doctor may want to monitor your health and see if your tumors have grown or returned, and they may use imaging tests to check for new tumor growth.⁴ Your doctor will ask about your personal history of desmoid tumor recurrences — be sure to tell them if you’ve ever had a tumor return after treatment.⁵

Your medical team can help you if you’re dealing with ongoing symptoms related to your desmoid tumors. For example, desmoid tumors affecting your arms and legs might affect your ability to move.⁹ Your team may recommend rehabilitation therapy after treatment to help you regain mobility and improve your quality of life.⁴

Treatment Following Progression or Recurrence

If your desmoid tumors progress or come back or if you experience new or worsening symptoms, your care team can talk with you about other treatment options. They may recommend medical therapy, such as chemotherapy, targeted therapies, radiation therapy, surgery, a localized therapy like ablation, or nonsteroidal anti-inflammatory drugs for pain.⁴

Your care team can help you understand the benefits and risks of the treatment options available to you.

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