Being diagnosed with a desmoid tumor may seem overwhelming. You may even feel uncertain about the future. However, you should know there are several treatment options available for people with desmoid tumors. These treatments may help you get relief from symptoms, shrink the tumor, or help your doctor watch how the tumor grows.

Although you may not know everything about your diagnosis, you can start by learning about the treatment approaches your doctor may consider. In this article, we’ll cover the types of treatments that may be used for desmoid tumors. Desmoid tumors vary widely from one person to another, so everyone's treatment plan is tailored specifically to their individual needs. Your doctor can help you better understand treatment options for desmoid tumors and figure out the best plan forward for you.

1. Active Surveillance

While desmoid tumors may cause a lot of problems in the body, some tumors only cause minor symptoms. Many people don’t have any symptoms at all. If a desmoid tumor isn’t very big or causing harm, your doctor may start off with active surveillance, also known as watchful waiting. Your doctor may also recommend active surveillance when the location of the tumor makes other treatments risky.

During active surveillance, your doctor will closely monitor you every few months and see how the tumor grows over time. To do this, they’ll use an imaging test such as magnetic resonance imaging (MRI) to look at tumor cells in the body. A CT scan can expose you to radiation, so most of the time MRI is used.

How often you will need a scan depends upon your symptoms, the size and location of the tumor, and the pace of any apparent growth. Some tumors grow very slowly and never get big enough to cause problems. Other tumors may even shrink on their own and go away completely.

By keeping an eye on the tumor, your doctor may help you avoid unnecessary surgery or other treatment. In many cases, only active surveillance is needed because the tumor stops growing or shrinks on its own. However, if your tumor keeps growing, or if it starts to cause more severe symptoms, you may benefit from further treatment.

2. Surgery

Surgery used to be the main recommended treatment for desmoid tumors. Today, other treatment options are usually considered before surgery. However, surgery to remove desmoid tumors may be recommended in some cases, especially when small tumors are found in the abdominal wall. A surgeon will operate to try to remove the entire tumor without leaving any tumor cells behind.

Surgery comes with risks. Additionally, even if a desmoid tumor is surgically removed, there’s a high chance that the tumor will come back. For this reason, your doctor may want to avoid surgery unless absolutely necessary.

3. Chemotherapy

Although desmoid tumors are considered benign (not cancerous), the treatment of desmoid tumors may involve medications also used to treat cancer. Chemotherapy uses drugs that are toxic (poisonous) to quickly dividing cells. Because tumor cells divide faster than most normal cells, they are especially sensitive to chemotherapy. There are many different types of chemotherapy drugs — which combination you might get depends on your particular case.

Although chemotherapy is effective at destroying tumor cells, it is also toxic to normal cells. To avoid having your body exposed to too much toxicity, your doctor may recommend a lower dose of chemotherapy drugs. Low-dose chemotherapy can also be effective at shrinking desmoid tumors, and many people can go years without their tumor growing back. This option may be preferred for young people diagnosed with desmoid tumors.

4. Radiation Therapy

Radiation therapy — also called radiotherapy — is another common cancer treatment. It may be recommended for some people with desmoid tumors. Radiotherapy uses high-powered X-rays to damage tumor cells. This treatment may be used for desmoid tumors that don’t respond well to other treatments, although it is usually not recommended as a first option because it carries a risk of radiation-induced secondary cancers.

5. Nonsteroidal Anti-Inflammatory Drugs

For some people, desmoid tumors can cause severe pain. To help relieve pain caused by desmoid tumors, your health care provider may recommend nonsteroidal anti-inflammatory drugs (NSAIDs).

In the past, NSAIDs were used to help to shrink desmoid tumors. However, the National Comprehensive Cancer Network (NCCN) and Desmoid Tumor Working Group (DTWG) guidelines do not recommend NSAIDs for treating desmoid tumors.

6. Hormonal Therapy

Research studies have shown the growth of desmoid tumors may partly involve hormones like estrogen. Anti-hormonal therapies like tamoxifen have been used to slow the growth of desmoid tumors. However, just like NSAIDs, drugs like tamoxifen are not recommended by NCCN or DTWG because there isn’t enough evidence that they are effective.

7. Targeted Therapy

Targeted therapies are drugs that affect only a certain protein or group of proteins. Tyrosine kinase inhibitors (TKIs) are one type of targeted therapy that may be used to treat desmoid tumors. TKIs include drugs like:

• Sorafenib
• Imatinib
• Pazopanib

TKIs are effective for people with desmoid tumors. Many people had longer progression-free survival, meaning they went a longer time without their tumors getting worse. Studies show sorafenib causes a reduction of tumors in almost one-third of people and at least some benefit for 80 percent of people with desmoid tumors. Although less studied, pazopanib also seems to be helpful.

Gamma secretase inhibitors (GSIs) are another type of targeted therapy. GSIs have been shown to shrink desmoid tumors in clinical trials. In 2023, a GSI called nirogacestat (Ogsiveo) was approved by the FDA for the treatment of desmoid tumors. This may be recommended as a treatment option if you have a tumor that doesn’t respond to other types of treatment, if you can’t have surgery, or if your tumor has come back after treatment.

All of these targeted therapies have risks and side effects. It’s important to discuss these with your doctor, as these drugs need to be taken for a long time. Researchers don’t yet know the full effects of taking them long term.

8. Ablation

Another treatment approach that can be used to kill tumor cells is ablation. This is a technique that uses a thin probe inserted through the skin to deliver therapy directly to the tumor. Ablation is considered a minimally invasive type of treatment and may be recommended as an alternative to surgery to treat desmoid tumors.

Different types of ablation techniques destroy tumor cells in different ways. Types of ablation that have been used for the treatment of desmoid tumors include:

• Cryoablation, which freezes the tumor
• Radiofrequency ablation, which creates heat using an electrical current
• High-intensity focused ultrasound, which creates heat using focused radiation
• Microwave ablation, which uses a thin needle to transmit microwaves to destroy cancer cells with heat

Ablation techniques can decrease the size of desmoid tumors, as shown in clinical studies. Although more studies are still needed to better understand how well these treatments work, you may still want to ask your doctor about ablation.

9. Clinical Trials

Scientists and doctors continue to look for new treatments for desmoid tumors. Researchers are running clinical trials for other types of targeted therapies to see if the drugs can slow down tumor growth. Talk to your doctor if you’re interested in learning about clinical trials for desmoid tumors.

Making Treatment Decisions

Choosing a desmoid tumor treatment should be a joint decision between you and your doctors. Talk to your desmoid tumor care team about what to expect from your different treatment options. This includes understanding the goal of each treatment and how your doctor will know if your treatment is working.

Some other topics to discuss include:

• How to manage side effects from treatments
• How to manage symptoms related to your desmoid tumor
• Your personal preferences around treatments
• Follow-up care plans after treatment is completed

Follow-Up Care

You will need periodic appointments with your doctor even after your treatment is over. This is known as follow-up care. Your follow-up appointments may include physical exams and imaging tests to check for new tumor growth.

Your follow-up appointments are an opportunity to talk with your doctor about any symptoms you may be experiencing. Some people have side effects even after they complete treatment. Your doctor can suggest ways to manage these long-term side effects. If your doctor suspects your symptoms are related to a new tumor, they will take the next steps to see if your tumor has returned or progressed.

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 tumors.

Do you have questions about treatments for desmoid tumors? Have you taken or are you currently taking any treatments? Share your experience in the comments below, or start a conversation by posting on your Activities page.