Historically, surgery was the standard treatment for desmoid tumors. Because these tumors tend to return after surgery, doctors often avoid recommending it as a first-line treatment.

You should always consult a team of desmoid tumor specialists before moving forward with surgery. If you’re not being treated by providers with experience treating desmoid tumors, you may want to seek a second opinion.

In this article, we’ll talk about when doctors choose to use surgery for desmoid tumors, the risks associated with it, and other treatment options available to you.

Surgery Isn’t Generally Recommended for Desmoid Tumors

Surgery is generally not the preferred treatment option for desmoid tumors.

“These days, I’m recommending surgery for very few desmoid tumor patients,” explained Dr. Seth Pollack, 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.

“If somebody is telling you that you need to have surgery for a desmoid tumor, you need to really push back on it and get different opinions.”

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Dr. Seth Pollack

First, in many cases, these tumors grow slowly and don’t cause serious problems. If your desmoid tumor isn’t causing any symptoms or affecting your organs, your doctor may choose to wait on treatment. This is known as “active surveillance” or “watchful waiting.”

Studies have found that for 20 percent to 55 percent of people who undergo active surveillance, their desmoid tumors never develop symptoms or demonstrate growth, so surgery may be avoidable.

Second, many desmoid tumors return at or near the original site following surgery. Desmoid tumors infiltrate the soft tissues and can have long projections or tendrils that reach into other tissues nearby. This makes it harder for the surgeon to remove the entire tumor.

Any desmoid tumor cells left behind can then grow into new tumors.

Get a Second Opinion

“If somebody is telling you that you need to have surgery for a desmoid tumor, you need to really push back on it and get different opinions,” Dr. Pollack recommended.

Even in cases where surgery could be appropriate, there may be alternate options to consider. For example, Dr. Pollack explained that he may try cryoablation instead of surgery in cases where medications aren’t a good option.

Cryoablation uses extreme cold to freeze and kill desmoid tumor cells. It is minimally invasive, very well tolerated, and usually doesn’t require a hospital stay.

“There’s still a high rate of failure for this treatment, but at least you don’t have to go through the surgery,” he said.

As with all treatment decisions, it’s important to have a discussion with your healthcare team about the benefits and risks of different treatment options. Together with your doctors, you can make an informed decision about the best next steps.

Risks of Surgery

All desmoid tumor treatments come with risks. Your doctors will help you weigh the benefits and risks of the procedure. Ultimately, you want to make the best personal decision for your overall health and quality of life.

Tumor Recurrence

One of the primary risks of desmoid tumor surgery is the chance that the tumor will return. Researchers have found the recurrence rate — or rate of desmoid tumors returning — is between 24 percent and 77 percent.

There’s still a chance your desmoid tumor will return even if the surgeon entirely removed the tumor and had negative margins (no remaining cells).

Dr. Pollack noted that in his experience, tumor recurrences tend to “happen in a worse way when people have gone to surgery than when they undergo different treatments.”

For example, some people develop multifocal tumors (multiple small tumors within the same general area) after surgery.

Subsequent surgeries could lead to more recurrences, as well. “The chance that you’re going to have another recurrence after your next surgery is very high,” Dr. Pollack said.

Surgical Complications

It’s possible to have serious complications from desmoid tumor surgery. Surgeons try to take the entire desmoid tumor and nearby tissues to reduce the chance of recurrence, but they may end up taking too much tissue.

This can lead to loss of mobility, pain, and scarring.

Dr. Pollack explained that he’s seen complications become more severe with more surgeries: “If you’ve had surgery and you’ve had a recurrence, you really absolutely do not want to be going for a second surgery after your first surgery.”

“When I first started [treating] desmoid tumors, we had patients [that had undergone] six, seven surgeries. They were debilitating patients who had amputations and all kinds of terrible things.”

Recovery After Surgery

It can take a few weeks to heal from desmoid tumor surgery. Your recovery will be affected by the location of your tumor and how much tissue was removed. Your surgeon will discuss what your recovery will look like before the procedure.

After surgery, you may experience fatigue as your body heals. You may also need a plan for pain management. Be sure to follow your surgeon’s instructions so you heal properly and avoid infections.

There’s always the risk that your desmoid tumor will return after surgery. Talk to your doctor about a monitoring plan for after your surgery.