If you’ve recently been diagnosed with desmoid tumor, you may be wondering about treatment options. Desmoid tumors are noncancerous tumors that grow in the body’s soft tissues, such as the muscles, tendons, ligaments, fat, or abdominal wall.

For many people with desmoid tumor, the primary treatment is active surveillance or watchful waiting, explained Dr. Seth Pollack, a sarcoma specialist in Chicago. Dr. Pollack is the director of the sarcoma program at the Lurie Cancer Center and the Steven T. Rosen professor of cancer biology at Northwestern University Feinberg School of Medicine.

Active surveillance involves monitoring your tumor and overall health before beginning medical treatment. Dr. Pollack may recommend active surveillance for people who are not experiencing pain or other symptoms. Desmoid tumors tend to be slow growing, and some can even shrink on their own. In this case, active surveillance can provide necessary monitoring. “We’re probably overtreating desmoid tumors,” Dr. Pollack told MyDesmoidTumorTeam.

What Is Active Surveillance?

Active surveillance, also known as watchful waiting, is a medical approach that focuses on monitoring a desmoid tumor without initiating treatment. Your healthcare team will likely use regular scans to check the tumor for signs of growth or shrinking.

Dr. Pollack explained that active surveillance may be appropriate for people without symptoms or pain. “You don’t need to treat these patients right away,” he said. Because many desmoid tumors grow very slowly or even shrink on their own, active surveillance allows safe monitoring without starting treatment that could be unnecessary or cause bothersome side effects. “A lot of times you’re doing more harm than good by treating patients,” Dr. Pollack added.

Why Is Active Surveillance Recommended for Desmoid Tumor?

Active surveillance is often recommended for desmoid tumor because of the nature of this type of tumor. Desmoid tumors usually develop as a single tumor. Unlike cancerous tumors, they usually do not spread to other areas of the body. They are considered locally aggressive tumors, which means that they may grow into nearby tissues. Many desmoid tumors stay the same size or grow very slowly.

Desmoid tumors that grow quickly are considered more serious and will require treatment. Dr. Pollack explained that when a desmoid tumor is causing severe pain, it should be treated.

However, when a person is not experiencing symptoms and their tumor isn’t growing, active surveillance is often the right approach. “We watch patients and do scans regularly,” Dr. Pollack said.

What To Expect During Active Surveillance

When beginning a period of active surveillance, it’s important to work with a specialist with desmoid tumor expertise. Your healthcare provider will likely be called a sarcoma specialist — an oncologist who specializes in diagnosing and treating sarcomas. Discuss your treatment options and goals with your healthcare team. It is possible to live well and maintain a good quality of life while undergoing active surveillance for a desmoid tumor.

Regular Appointments

During active surveillance, you can expect to regularly see your sarcoma specialist and healthcare team for in-person appointments and scans. Dr. Pollack begins by seeing people relatively frequently and then spacing out the appointments as long as the tumor is not changing.

“I may even start with a follow-up scan only after two months the first time I see [a new patient] just to see that their tumor is not growing,” explained Dr. Pollack. From there, Dr. Pollack usually recommends repeating a scan every three to four months for one to two years. If the tumor shrinks or stays the same, he may space out the follow-up schedule to a scan every six months and eventually once a year.

MRI or Other Scans

In most cases, Dr. Pollack recommends monitoring desmoid tumors with magnetic resonance imaging (MRI) scans. “MRI does not have radiation like a CT scan,” explained Dr. Pollack. While computed tomography (CT) scans expose you to a very low level of radiation, it can add up after having many repeated CT scans over months to years of monitoring. “Because of that, I like to default on the side of doing an MRI if all options are equal, though CT does make more sense for many patients,” explained Dr. Pollack.

However, there may be times when a CT scan or ultrasound is recommended for desmoid tumors. Some people find the process of staying still for an MRI to be uncomfortable. “I don’t think there’s anything wrong with getting CT scans,” said Dr. Pollack.

Once a person has been on active surveillance for a period of time, it may be appropriate to switch from MRI scans to ultrasounds, Dr. Pollack explained. An ultrasound is a safe and convenient way to monitor desmoid tumors. However, it requires a skilled ultrasound technician with experience in monitoring desmoid tumors.

Signs It’s Time To Start Treatment

You may need to move from active surveillance to treatment for your desmoid tumor.

Signs that it may be time to start medical treatment for a desmoid tumor include:

• Increased pain — Pain is the most common symptom of desmoid tumors. If you experience an increase in pain, the tumor may be growing. People with severe pain should seek immediate medical help.
• Swelling — A desmoid tumor may cause swelling. If you notice that you have a new area of swelling or inflammation, call your healthcare team.
• Change in daily activities — If you notice that you are having trouble with your daily activities, such as going to work or walking, it may be time to begin treatment.

If you and your healthcare team decide it’s time to start treatment, desmoid tumor treatment options may include:

• Targeted therapy
• Chemotherapy
• Radiation
• Ablation
• Surgery

In most situations, medical therapies like targeted drugs or chemotherapy will be the first recommendation.

Dr. Pollack cautioned against surgery for most tumors. “These days, I’m recommending surgery for very few desmoid tumor patients,” he said. Dr. Pollack explained that surgery recovery can be very challenging, and the tumor may recur (grow back). He recommended seeking a second opinion if your specialist recommends surgery.

What To Do if You Notice New Symptoms

If you notice any new symptoms during active surveillance, let your healthcare team know right away. “We always want patients to reach out to us if they have new symptoms, especially pain, because sometimes it means that their tumor’s changing,” said Dr. Pollack. He explained that new symptoms can give clues about how the tumor is changing, which is helpful when determining an effective treatment plan.

For example, it’s possible to experience an increase in pain with a tumor that has not grown. In this case, Dr. Pollack explained that the tumor could be changing subtly and perhaps pressing on a nerve. He said that it’s important to update your provider with any change in symptoms. Fortunately, there are treatment options available to improve your pain, so do not hesitate to reach out for help.

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