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, which include muscles, tendons, and fat. Although they are benign, they can be aggressive and may require treatment to manage symptoms and prevent complications.

In this article, we’ll cover the symptoms of chest wall desmoid tumors and how doctors diagnose them. We’ll also cover treatment options that may help shrink or improve symptoms of these tumors and improve your quality of life.

What Are Chest Wall Desmoid Tumors?

Desmoid tumors are rare tumors that form in the body’s soft tissues. These growths don’t spread to other parts of the body. Desmoid tumors may be described by where they form. Chest wall tumors are extra-abdominal because they form outside the abdomen.

The chest wall contains the bones, muscles, fat, and skin that protect your vital organs. Your heart, lungs, liver, and major blood vessels are all in the chest wall. Desmoid tumors can form along the muscle and fat, where they might press on important structures.

In the United States, doctors diagnose about 900 to 1,500 desmoid tumor cases every year. Chest wall desmoid tumors are even more rare. They account for 10 percent to 20 percent of these cases.

Symptoms of Desmoid Tumors in the Chest Wall

Desmoid tumors can cause different symptoms depending on their location, size, and severity. If you have a desmoid tumor in the chest wall, you may experience pain, trouble breathing, or chest swelling. It’s also possible that you may not experience any symptoms associated with a desmoid tumor.

Chest Pain or Discomfort

Pain is the most common symptom of desmoid tumors. Chest pain is a common symptom of many health conditions and can be difficult to pin down to a single cause. Your care team can help you figure out if your chest pain is related to a desmoid tumor.

Some people may not experience any pain at all. However, there are other symptoms related to desmoid tumors that are important to watch out for.

Swelling of the Chest Wall

Desmoid tumors often cause swelling around the tumor site. For desmoid tumors in the chest wall, swelling of the chest is one of the most common symptoms doctors see in a physical exam.

Fatigue

Fatigue is a general feeling of exhaustion or tiredness that sleep can’t fix. It’s common for people to feel fatigued while living with desmoid tumors. If you’re feeling more tired or have less energy than usual, let your doctor know. Although fatigue can be a symptom associated with a desmoid tumor, other more common causes may need to be considered.

Trouble Breathing

Desmoid tumors can be aggressive and spread into nearby tissues. In the chest wall, these tumors can grow larger and press on the lungs or blood vessels. This can cause breathing problems like:

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

Be sure to talk to your doctor if you’re experiencing breathing problems. Getting help early can make it easier to manage your symptoms and prevent complications.

Anxiety and Depression

Chronic pain or other unresolved symptoms can take a toll on your mental and physical health. People with painful desmoid tumors may have a harder time getting a good night’s sleep. Studies show that this can lead to anxiety, depression, and irritability.

It’s important to take care of your mental health and well-being when living with desmoid tumors. You can work closely with your doctor and mental health specialists to manage your chronic pain and treat 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. In this procedure, a small tissue sample is taken to check for tumor cells under a microscope.

The sample is sent off to a lab for evaluation by a pathologist (cell specialist). 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 treatment 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, your doctor may choose to actively monitor it. This strategy is known as taking a “watch-and-wait” approach. Be sure to let your care team 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 the first treatment for desmoid tumors. Nirogacestat (Ogsiveo) treats people with desmoid tumors that require treatment. This medication works by blocking the enzyme gamma-secretase, which desmoid tumor cells use to grow and divide.

Other targeted therapies for desmoid tumors include tyrosine kinase inhibitors. They block proteins that send growth signals in tumor cells. Examples include imatinib (Gleevec), pazopanib (Votrient), and sorafenib (Nexavar).

Chemotherapy

Although desmoid tumors are not cancerous, they can be managed with many of the same treatments used for cancer. For example, chemotherapy works by using potent drugs to kill cells.

Surgery

Surgery used to be the primary way of treating desmoid tumors. However, this is no longer the case. Many desmoid tumors can stop growing or shrink on their own, and there is also a high chance of the tumor returning after surgery.

Surgery to remove a chest wall desmoid tumor can be challenging. A surgeon might need to remove ribs or large areas of tissue. They can rebuild these structures with bone grafts or prosthetic materials.

Desmoid tumor doctors recommend considering surgery for a desmoid tumor only after consulting with a multidisciplinary tumor board. This team of specialists will review your case and suggest the best treatment options.

Radiation Therapy

Radiation is sometimes used for extra-abdominal desmoid tumors, such as those in the chest wall. It may be used alone or alongside surgery. Like surgery, it’s not being used as much anymore.

Hormonal Therapy

Some studies have found that desmoid tumors may use the hormone estrogen to grow and spread. In the past, hormonal therapy, such as tamoxifen, was used to treat desmoid tumors. However, doctors no longer recommend hormonal therapy.

Outlook With Desmoid Tumors in the Chest Wall

People living with desmoid tumors should be aware that they may return after treatment. It’s important to follow up with your doctor regularly after you receive treatment to determine whether your desmoid tumor has grown or returned.

Find Your Team

MyDesmoidTumorTeam is the social network for people with desmoid tumors and their loved ones. On MyDesmoidTumorTeam, members come together to ask questions, give advice, and share their stories with others who understand life with desmoid tumors.

Are you living with a desmoid tumor affecting your chest wall? What symptoms do you have? How has your doctor treated it? Share your experiences in the comments below, or start a conversation by posting on your Activities page.