Surgery was once considered the standard treatment for desmoid tumor. Today, researchers and doctors are far more cautious about operating on these noncancerous soft tissue tumors. Many people who have desmoid tumor can live well without surgery. In some cases, surgery may cause more harm than good.

In an interview, Dr. Seth M. Pollack, director of the sarcoma program at Northwestern University Feinberg School of Medicine, shared key questions to ask before moving forward with desmoid tumor surgery. These questions can help you understand your options, avoid unnecessary risks, and take an active role in decision-making with your healthcare team.

1. Do I Really Need Surgery Right Now, or Can We Wait?

This may be the most important question to ask when considering desmoid tumor treatment options. According to Dr. Pollack, active surveillance (sometimes called watchful waiting) is now considered the first-line treatment for many people with desmoid tumor. Many tumors stop growing or even shrink over time without treatment. “You don’t need to treat these patients right away,” he said. “A lot of times you’re doing more harm than good by treating patients.”

However, many people may have a desmoid tumor that is painful, growing quickly, or in “a tough location,” he added. “For those patients, it might be really important to start treatment immediately,” he said.

Starting with active surveillance for tumors that aren’t causing symptoms can help avoid the risks of surgery. Regular imaging allows doctors to monitor any changes. Dr. Pollack recommends magnetic resonance imaging (MRI) every few months: “I like to do an MRI for most patients. I think that’s a good way to watch desmoid tumors.”

2. What’s the Risk of the Tumor Coming Back After Surgery?

Desmoid tumors have a high rate of recurrence (returning) after surgery, which is one reason doctors may hesitate to recommend it. Dr. Pollack explained that a tumor that returns can behave differently from the original tumor. “I’ve seen cases where the recurrences happen in a worse way after people have gone to surgery,” he said.

Repeat surgeries also carry a higher risk of complications, which can lead to a cycle that affects quality of life. Understanding recurrence risk can help you decide whether surgery is worth the possible side effects and long-term impact or whether to consider other desmoid tumor treatment options.

3. What Are the Potential Risks and Long-Term Effects of Surgery?

Surgery for desmoid tumor may involve more than removing a tumor. Because these tumors often grow around nerves, muscles, and connective tissue, surgery can lead to effects such as:

• Chronic pain
• Loss of function or mobility
• Significant scarring
• Prolonged recovery times

“I think that sometimes the surgery can even make things worse,” Dr. Pollack said.

It’s important to ask about both the short-term risks and possible long-term effects on daily function before deciding to move forward with surgery.

4. Should I Get a Second Opinion?

As long as your tumor isn’t causing a medical emergency, consider talking with another healthcare provider. “You should probably get a second opinion if somebody is recommending surgery,” Dr. Pollack said.

Because desmoid tumor is rare, affecting about 5 people per 1 million, many clinicians may not be up to date on current treatment approaches, Dr. Pollack said. A specialist with experience in this condition can help confirm whether surgery is necessary or if less invasive options may be just as effective.

Getting another opinion can be especially valuable if you feel rushed to make a decision about treatment.

5. What Nonsurgical Options Are Available?

Surgery is no longer the only — or preferred — option for many people with desmoid tumor, according to current treatment guidelines. Dr. Pollack highlighted several alternatives, including:

• Active surveillance with repeated imaging tests
• Medical therapies, including targeted therapy and chemotherapy
• Cryoablation, a minimally invasive procedure that freezes the tumor without removing it

“These days, if I think that medical therapy isn’t a good option for a patient, the first thing I’m doing is recommending cryoablation if that’s possible,” said Dr. Pollack.

Each option has its own risks, benefits, and timelines. Asking about alternatives helps ensure surgery is compared with all available treatment strategies.

6. How Will Surgery Affect My Quality of Life?

Desmoid tumors can vary widely in symptoms and impact on daily life. Depending on a tumor’s size and location, some people have significant pain or limited movement, whereas others can work, exercise, and live normally.

Dr. Pollack emphasized that treatment decisions should reflect what matters most to each person. Some may prefer living with mild symptoms to facing the uncertainty and recovery of surgery or long-term medication. “With a desmoid tumor, I’m usually OK with whatever the patient decides, if they’ve really thought it through and they’ve heard all the information,” he said.

Talking with your doctor about how surgery may affect your quality of life can help guide decisions based on your goals, values, and comfort with risk.

7. What Happens if the Tumor Returns After Surgery?

Before choosing surgery, it’s important to understand the long-term plan, not just the procedure itself. Desmoid tumors often return after surgery, and another operation generally is not recommended.

Dr. Pollack cautioned that repeat surgeries are rarely a good idea because risks increase and benefits decrease. Knowing how recurrence would be managed can help you decide whether surgery fits your overall treatment plan.

This question can also open the door to discussing other treatment options if the tumor returns.

Deciding Whether Surgery Is Right for You

For many people diagnosed with desmoid tumor, surgery isn’t the first or only approach — and in many cases, it can be avoided altogether. Asking the right questions can help you slow down and explore safer ways to manage the tumor and support your quality of life.

“There are actually a lot of options now,” Dr. Pollack said. “You can live a very long happy life with that tumor sitting around doing nothing.”

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