Desmoid tumors are known for being aggressive and often growing back after surgery, making them hard to treat. In the past, surgery was the go-to option, but current guidelines recommend it only in certain cases.

If your doctor has recommended that you get desmoid tumor surgery, it’s important that you understand why and know what to expect after the procedure. This article will discuss when desmoid tumor surgery is advised and offer details about recovery time and follow-up care.

When Surgery Is Recommended for Treating Desmoid Tumors

Desmoid tumors — also known as “aggressive fibromatosis” — are rare, noncancerous growths that develop in the body’s soft or connective tissues (nerves, ligaments, muscles, and tendons). These tumors can appear anywhere but are most common in the abdomen, arms, and legs. Although desmoid tumors don’t metastasize (spread to other parts of the body), they can be aggressive. This means that they grow into surrounding tissues and organs.

In recent years, the approach to treating desmoid tumors has changed significantly. Surgery — once the standard desmoid tumor treatment — is no longer the first-line approach. Desmoid tumors tend to return after surgery, so other treatment options are now preferred. Your care team may suggest active surveillance (monitoring the tumor periodically without treating it) or medical therapy.

Surgery still may be considered for some cases, such as if desmoid tumors cause significant symptoms or are located in areas where they pose a risk. Tumors pressing on major blood vessels, nerves, or organs like the intestines, kidneys, or lungs might call for surgery. When deciding whether to perform surgery, doctors consider many factors, including the tumor’s size, location, and growth rate, as well as your overall health and personal preferences.

Recovery After Desmoid Tumor Surgery

The recovery process after desmoid tumor surgery can vary. Recovery times depend on the location and size of the tumor and the complexity of the procedure. Here’s a general outline of what you can expect during the recovery process.

Immediately Following Surgery

Your recovery time depends on how complex your surgery was and how fast you heal. Children may stay in the hospital for a day or two, but adults may be hospitalized for several days.

Pain is common after surgery, and you’ll receive medication to manage discomfort. The intensity and duration of pain can vary based on the tumor’s location and the extent of the surgery. Immediately after surgery, you’ll be closely monitored for any signs of complications, such as infection, bleeding, or issues with wound healing. Medical staff will also help you move around as needed.

During surgery, one or more plastic drains may be placed to prevent fluid from collecting in the surgical area. The drains are often removed before discharge from the hospital, but sometimes people go home with them.

The First Few Weeks After Surgery

It's important to take proper care of your surgical site. This helps prevent infection and promotes healing. You’ll receive instructions on how to clean and dress your wound. Your doctor will likely recommend that you avoid strenuous activities that could stress the incision site.

Regular follow-up appointments will be scheduled to monitor the healing process and address any concerns. During these visits, your surgical team will:

• Check the incision site.
• Measure your recovery progress.
• Adjust your pain medications as needed.
• Remove any drains that remained at discharge.

Your doctor may encourage you to slowly return to normal activities as you feel comfortable. However, lifting heavy objects and intense physical activity should be avoided until your doctor gives the all-clear.

Long-Term Recovery

Depending on the surgery’s impact, physical therapy may be recommended to help rebuild your strength and mobility. This is especially true if the tumor was located in your arms or legs or affected movement.

Recovering from surgery can be emotionally challenging. You might benefit from counseling or support groups to help cope with the stress and anxiety related to your condition and recovery.

Importance of Follow-Up Care After Desmoid Tumor Surgery

Even after a successful surgery, follow-up care is critical for managing desmoid tumors. This is because the tumors can grow back after surgery.

Regular Monitoring

You’ll need regular imaging tests such as MRI or CT scans to check for signs of new tumor growth. Your health care team will tell you how often you need to return for monitoring and new scans. This can depend on your individual risk factors and certain aspects of your tumor.

Typically, scans are scheduled every three to six months at first. They can become less frequent over time if your tumor doesn’t come back. Monitoring helps make sure that new growths are identified and treated right away. This helps lower your risk of complications and improves your outlook.

Management of Recurrence

If a tumor returns, your treatment plan may involve nonsurgical options such as medication, radiation therapy, or other localized treatments. New systemic (body-wide) treatments — like nirogacestat (Ogsiveo), approved in November 2023 by the U.S. Food and Drug Administration (FDA) — have shown promise in managing desmoid tumors. Nirogacestat or other medications may be able to treat your tumor without the need for invasive procedures like surgery.

Your health care team might also consider prescribing tyrosine kinase inhibitors (TKIs). TKIs aren’t FDA-approved for desmoid tumors but are used off-label (outside the approved use). Examples include imatinib (Gleevec), pazopanib (Votrient), and sorafenib (Nexavar), which may be effective for some people. Radiation therapy or chemotherapy might be used to manage tumors that return after surgery. These treatments might also be used when surgery is not a good option.

Lifestyle Adjustments

You might need to make lifestyle changes to support your overall health and well-being. These healthy measures may include:

• Maintaining a balanced diet
• Getting regular exercise
• Avoiding activities that could stress your surgical site

Staying active can help improve overall physical function and mental health. Be sure to follow your health care team’s advice on the types of exercise that are safe after surgery.

Pain and Symptom Management After Desmoid Tumor Surgery

Chronic pain or discomfort can be an ongoing issue for some people after desmoid tumor surgery. Your health care team may recommend medications, physical therapy, and alternative therapies such as acupuncture. Relieving pain is important for improving quality of life and allowing you to return to your normal routine after surgery.

Continued Emotional and Psychological Support

Coping with the possibility of your desmoid tumor returning can be stressful. Ongoing emotional and psychological support can help you manage anxiety and maintain a positive outlook.

Support groups, counseling, and mental health services can provide a platform for you to share your experiences and gain support from others facing similar challenges. Addressing the emotional and psychological aspects of recovery is as important as managing the physical aspects.

Education and Self-Advocacy

It’s important to educate yourself about the nature of desmoid tumors and any signs that they might return. Regular follow-ups can empower you to take an active role in your care. Be sure to communicate openly with your health care team — ask questions, and seek second opinions if necessary. Being well informed can help you make better decisions about your treatment options and follow-up care.

Although surgery is no longer the first-line treatment for desmoid tumors, it remains an important option in certain cases. Knowing what to expect during recovery and understanding the importance of follow-up care can help you navigate your treatment journey with more confidence.

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.

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