Pain is the most common symptom of a desmoid tumor, a noncancerous tumor that develops in the body’s soft tissues. Many people with desmoid tumors don’t have symptoms. When your tumor isn’t changing or causing symptoms, you may not need treatment right away. In these cases, active surveillance could be the right approach, 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, also called watchful waiting, is a medical approach that involves monitoring your tumor closely without treating it. “Active surveillance can be the primary treatment for patients with desmoid tumors,” Dr. Pollack told MyDesmoidTumorTeam. However, once a tumor begins causing pain, you may need a new treatment plan.

What Is Active Surveillance?

Active surveillance involves closely monitoring a tumor that is considered low risk or slow-growing. Active surveillance is often used to care for people with a desmoid tumor because these tumors often grow very slowly, stay the same, or even shrink on their own.

Desmoid tumors usually develop as a single tumor, though it’s possible to have several. Unlike cancerous tumors, desmoid tumors don’t spread to distant areas of the body. They’re considered locally aggressive tumors because they can grow into nearby tissues.

Active surveillance might be right for you if you’re not experiencing symptoms or have only mild pain. During active surveillance, you’ll work with a sarcoma specialist to monitor your tumor for any signs of growth or shrinking. A sarcoma specialist is an oncologist who specializes in diagnosing and treating sarcomas.

It’s vital to see a specialist who is trained and experienced in the management of desmoid tumors because these tumors are very rare. They affect about 2 to 4 people per million worldwide each year.

Dr. Pollack discusses active surveillance with people whose tumors are not growing or causing symptoms. “You don’t need to treat these patients right away,” he said. “And a lot of times, you’re doing more harm than good [with treatment].” Desmoid tumor treatment options include several medications and chemotherapy that may cause uncomfortable side effects. If your tumor isn’t growing or bothering you, active surveillance could be a way to avoid the downsides of more intense treatments.

However, active surveillance isn’t right for everyone. Dr. Pollack recommended beginning medical treatment right away if your tumor is growing rapidly or causing severe pain. Desmoid tumors are considered more serious if they’re quickly growing and changing.

What To Do If You Develop New Symptoms

Contact your healthcare team right away if you develop any new symptoms during active surveillance. “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,” explained Dr. Pollack.

It’s helpful to be aware of symptoms that could be related to a desmoid tumor, including:

• Pain at or near the site of the tumor
• Swelling near the tumor
• Reduced mobility or range of motion

When a desmoid tumor grows, it can affect the surrounding tissues. For example, if you have a tumor in your shoulder, it could make it difficult to move your shoulder or arm on that side. Let your healthcare team know of any new symptoms, even if you’re unsure if they’re related to the tumor.

When you see your healthcare provider to discuss your new symptoms, they’ll probably start by ordering an MRI scan. Dr. Pollack recommended regular MRI scans during active surveillance, including any time new symptoms develop.

What New Pain Could Mean

Dr. Pollack explained that a person’s symptoms could offer clues about how the tumor is changing. “Sometimes there is a subtle change in the tumor, even if we’re not seeing it as visual growth,” he said. Dr. Pollack explained that new pain can be the first sign that the tumor is changing, even if it looks the same on an MRI scan. He said that pain could mean the tumor is now pressing on a nerve or surrounding tissue.

“Even if we’re not seeing visual growth [on a scan], sometimes a very slight change in the tumor could be very painful,” said Dr. Pollack. He explained that even when a tumor is shrinking, it could cause increased pain if it is affecting a nerve.

Because any change in your pain level can point to how the tumor is changing, it’s essential to discuss any new symptoms with your healthcare team. Dr. Pollack said that sometimes a person’s pain improves before the scans show any signs of the tumor shrinking. This is important for your healthcare provider to know.

Desmoid Tumor Treatment Options

Your healthcare team may recommend beginning medical treatment if your tumor appears to be growing or changing. This is especially true if the tumor is causing uncomfortable symptoms such as increased pain.

If your tumor has begun to grow or spread, your healthcare team may recommend one or more of the following desmoid tumor treatment options:

• Targeted therapies — Medical drugs and therapies that target and attack specific proteins in tumor cells. Targeted therapies are an effective treatment option for desmoid tumors.
• Ablation — Minimally invasive treatments used to shrink or destroy a tumor. Cryoablation freezes tumor cells, and radiofrequency heats them.
• Radiation — High-energy beams that kill tumor cells and prevent growth
• Chemotherapy — Medications that kill fast-growing tumor cells. Chemotherapy may be used before surgery to shrink the tumor.
• Surgery — Surgical removal of part of or the entire tumor. There is a high risk of recurrence after surgery.

Dr. Pollack explained that there are many downsides to surgery. “These days, I’m recommending surgery for very few desmoid tumor patients,” he said. Dr. Pollack explained that depending on the tumor location, recovering from surgery can be very challenging.

Dr. Pollack strongly recommended seeking a second opinion if your healthcare provider recommends surgery, especially if you have already had a surgical removal in the past. “The chance that you’re going to have another recurrence after your next surgery is very high,” he said.

Because there are several ways to treat a desmoid tumor, it’s important to work with a healthcare provider who is open to shared decision-making. Dr. Pollack said that he discusses all of the options with his patients and decides on next steps together with them. “With a desmoid tumor, I’m usually OK with whatever the patient decides,” he explained, “if they have really thought it through and heard all the information.”

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