If you or a loved one has been diagnosed with a desmoid tumor in the chest wall, you may be wondering what to expect.

Desmoid tumors are noncancerous tumors that affect soft tissues, including muscles, tendons, and fat. Although they don’t spread to other parts of the body, they can grow into nearby tissues and may require treatment to manage symptoms and prevent complications.

In this article, we’ll cover the symptoms of chest wall desmoid tumors, the diagnostic process, and your treatment options.

🗳️ Have you or a loved one been diagnosed with a desmoid tumor in the chest wall?

Yes

No

I’m currently waiting for a diagnosis.

Something else/other

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

Symptoms of Desmoid Tumors in the Chest Wall

Desmoid tumors can cause different symptoms depending on their location and size. It’s also possible that you may not experience any symptoms from a desmoid tumor.

Here are some symptoms you may experience.

Chest Pain or Discomfort

Pain is one of the most common symptoms of desmoid tumor. Chest pain is also a symptom of many health conditions, so it can be difficult to identify the cause. Your care team can help determine whether your chest pain may be related to desmoid tumor.

Swelling of the Chest Wall

Desmoid tumors can cause swelling around the tumor. For desmoid tumors in the chest wall, swelling is one of the most common signs found during a physical exam.

Fatigue

People living with desmoid tumor may experience fatigue — a general feeling of exhaustion or tiredness that may not improve with rest or sleep. If you’re more tired or have less energy than usual, let your doctor know. Fatigue can occur with desmoid tumor, but it can also have many other causes.

Trouble Breathing

Desmoid tumors can grow into nearby tissues or press on surrounding structures. In rare cases, a chest wall desmoid tumor may cause breathing problems, such as:

• Pain in your lower chest
• Coughing
• Shortness of breath

Talk with your doctor if you’re having breathing problems. Seek urgent medical care for severe or sudden shortness of breath or chest pain.

Anxiety and Depression

Living with chronic pain and other symptoms can affect your mental and physical health. People with painful desmoid tumors may have trouble sleeping, and anxiety, depression, and irritability can also occur.

Taking care of your mental health is an important part of living with desmoid tumor. Your doctor and mental health specialists can help you manage chronic pain, anxiety, or depression.

Diagnosis of Desmoid Tumors in the Chest Wall

If your doctor thinks you have an abnormal mass of the chest wall, they may order one or more imaging tests, including:

• Chest X-rays
• Magnetic resonance imaging (MRI)
• Computed tomography (CT) scans

If your scans show signs of a chest wall tumor, your doctor may follow up with a biopsy. During this procedure, a small tissue sample is taken and then sent to a lab, where a pathologist looks at it under a microscope. A biopsy is the only way to confirm you have a chest wall desmoid tumor.

Treatment Options for Desmoid Tumors in the Chest Wall

Your medical team can discuss all possible options with you to find the best course of treatment for a desmoid tumor in the chest wall. Be sure to discuss expectations around outcomes with your care team and what to expect during treatment.

Active Surveillance

Not all desmoid tumors require immediate treatment, if any. If you’ve recently been diagnosed with a desmoid tumor and it isn’t causing serious problems, your doctor may choose to actively monitor it. This strategy is sometimes called “watch and wait.”

During active surveillance, your care team will monitor the tumor and your symptoms. Be sure to let them know about any new or worsening symptoms you think may be related to your tumor.

Targeted Therapies

In 2023, the U.S. Food and Drug Administration (FDA) approved nirogacestat (Ogsiveo), the first medication specifically approved to treat desmoid tumor, for adults with progressing desmoid tumors who need systemic (whole-body) treatment. Nirogacestat works by blocking an enzyme called gamma-secretase, which is involved in signals that help desmoid tumors grow.

Other targeted therapies used for desmoid tumors include tyrosine kinase inhibitors (TKIs), which block proteins involved in cell growth. TKIs include imatinib, pazopanib, and sorafenib.

Chemotherapy

Although desmoid tumors are not cancerous, some chemotherapy drugs used to treat cancer can also be used to treat desmoid tumor. Chemotherapy uses powerful drugs to damage or destroy fast-growing cells and may help control tumor growth.

Surgery

Surgery used to be the main treatment for desmoid tumor, but this is no longer the case. Some desmoid tumors stop growing or shrink on their own, and tumors can return after surgery.

Surgery to remove a chest wall desmoid tumor can be challenging. Depending on the tumor’s location and size, a surgeon may need to remove nearby tissue or parts of the ribs and reconstruct the chest wall.

Surgery is generally not the first treatment for desmoid tumor. When surgery is being considered, a multidisciplinary team of specialists can review your case and determine whether it’s an appropriate option.

Radiation Therapy

Radiation is sometimes used for extra-abdominal desmoid tumors, including tumors in the chest wall. Depending on the circumstances, it may be considered when other treatments are not appropriate or, in some cases, along with surgery.

Hormonal Therapy

Hormonal therapies such as tamoxifen were used in the past to treat desmoid tumor. However, current guidelines no longer recommend hormonal therapy for desmoid tumor.

Outlook With Desmoid Tumors in the Chest Wall

Desmoid tumors do not spread to distant parts of the body, but they can grow into nearby tissues and can return after treatment. Regular follow-up can help your care team monitor your desmoid tumor for changes or signs that it has returned.