At one time, 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. There are some cases where your health care team may recommend surgery to remove tumors, but this approach is less commonly used.

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. 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.

1. Surgery Is Used To Remove Tumors Near Vital Organs

Desmoid tumors — also known as aggressive fibromatosis — are abnormal growths that form in your body’s connective tissue. These tissues support, connect, or separate different types of tissues and organs in the body. In most cases, these tumors grow slowly and don’t cause serious problems. However, some people have aggressive desmoid tumors that grow quickly in the soft tissues near internal organs.

Your doctor may use surgery to remove an aggressive tumor that’s causing symptoms or pressing on nearby vital organs. Abdominal wall desmoid tumors grow in the connective tissue that surrounds your stomach and intestines. Intra-abdominal desmoid tumors form in the mesenteric tissue, which pads the organs and provides blood vessels.

Desmoid tumors can become dangerous if they begin growing near major blood vessels and organs, including your:

• Intestines
• Kidneys
• Lungs

During surgery, your surgeon will try to remove as much tumor tissue as they can. They’ll remove a border of healthy tissue (called the “margin”) as well so no tumor cells are left behind. This helps lower the risk of your desmoid tumors returning.

2. Surgery Is Sometimes Combined With Radiation Therapy

Radiation therapy uses intense X-ray beams or radiation to destroy desmoid tumor cells. It can be used before or after surgery to help shrink tumors and prevent them from returning.

In some cases, desmoid tumors may be large or intertwined with organs and tissues. This makes it hard for your surgeon to find where the tumor begins and ends. They can use radiation therapy to shrink your desmoid tumor, making surgery easier and improving its chances for success.

Doctors also use radiation therapy after surgery to kill any desmoid tumor cells left behind. This lowers the chances of your tumors returning. You may hear your doctor refer to this treatment as “adjuvant therapy.”

Not all doctors like to use radiation therapy for desmoid tumors. It may raise your risk of new cancer or more aggressive sarcomas (soft tissue cancers) later in life. A radiation oncologist — cancer radiation specialist — can discuss the risks and benefits with you.

3. In Most Cases, Surgery Isn’t Recommended for Desmoid Tumors

Surgery is generally not the preferred treatment option for desmoid tumors. This is because many desmoid tumors return at or near the original site following surgery. Researchers have found the recurrence rate — or rate of desmoid tumors returning — is between 24 percent and 77 percent. However, if your symptoms are significant or the location is particularly dangerous, surgery is still considered the first option.

Desmoid tumors aren’t like other types of tumors. They 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.

You may also have serious complications from desmoid tumor surgery. Surgeons try to take the entire desmoid tumor and nearby tissues, but they may end up taking too much tissue. There’s also still a chance your desmoid tumor will return even if the surgeon entirely removed the tumor and had negative margins (no remaining cells).

4. Surgery Comes With Potential Risks, Including Tumor Recurrence

All desmoid tumor treatments come with side effects — including surgery. 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.

Cleveland Clinic notes that it can take a few weeks to heal from desmoid tumor surgery. It likely depends on where your desmoid tumor was located and how intense the surgery was. Your surgeon will discuss what your recovery will look like before the procedure.

After surgery you may experience fatigue as your body heals and infections. Be sure to follow your surgeon’s instructions, so you heal properly and lower your risk of infection.

There’s also the risk that your desmoid tumor will return after surgery. Unfortunately, these tumors tend to be more aggressive than the original tumor that was removed. You may also develop multifocal tumors (multiple small tumors within the same general area).

5. There Are Several Treatment Options Other Than Surgery for Desmoid Tumors

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 20 percent to 55 percent of people who undergo active surveillance have their desmoid tumors go away on their own. You may be able to avoid unnecessary surgery this way.

Doctors and scientists have learned more about treating desmoid tumors in recent years. If your tumor begins growing (progressing), there are medications and localized treatments available to kill cells and shrink desmoid tumors.

In 2023, the U.S. Food and Drug Administration (FDA) approved nirogacestat (Ogsiveo) — the first FDA-approved treatment for desmoid tumors. Nirogacestat is a targeted therapy used in people who need systemic (bodywide) treatment.

Other targeted therapies aren’t FDA-approved for desmoid tumors, but doctors can prescribe them off-label. They’re known as tyrosine kinase inhibitors (TKIs), and they work by blocking growth signals in tumor cells. Examples include:

• Imatinib (Gleevec)
• Pazopanib (Votrient)
• Sorafenib (Nexavar)

Chemotherapy is another systemic treatment option for desmoid tumors. Doctors use chemotherapy to shrink aggressive tumors near vital organs or tumors causing symptoms. Chemotherapy drugs are toxic to rapidly dividing cells — including desmoid tumor cells. This treatment is typically used in cases when surgery isn’t an option.

The hormone therapy tamoxifen (Soltamox) has been used in the past to treat desmoid tumors, but this approach is less favored than targeted therapies. Nonsteroidal anti-inflammatory drugs (NSAIDs) are used to offer relief from side effects like pain and swelling.

For people who can’t have surgery, cryoablation is a treatment option. This technique uses extreme cold to freeze and kill desmoid tumor cells. Cryoablation seems to be best for treating extra-abdominal tumors (those found outside the abdomen). It is minimally invasive, is very well tolerated, and usually doesn’t require a hospital stay.

Talk With Others Who Understand

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 tumor.

Have you had surgery to treat your desmoid tumor? Share your experience in the comments below, or start a conversation by posting on your Activities page.