Tumors are abnormal growths that occur in solid tissues, such as organs, muscles, or bones. There are many different types of tumors, but tumors can be broadly categorized as cancerous (malignant) and noncancerous (benign). One of the key characteristics of a cancerous tumor is that it has the ability to spread (metastasize) to other areas of the body. Noncancerous tumors do not metastasize.
Desmoid tumors are a type of benign tumor that form in the body’s fibrous connective tissues. Also called dense connective tissues, fibrous connective tissues give the body structure and protection.
Fibrous connective tissues include:
- Tendons, cord-like tissues that connect muscles to bones
- Ligaments, cord-like tissues that connect bones to other bones
- Fascia, a type of tissue that wraps around muscles and organs
- Aponeurosis, which are flat, interweaving sheets of connective tissue that function similar to tendons
- The dermis, a fibrous inner layer of skin
Desmoid tumors most commonly occur in deeper tissues like tendons, ligaments, fascia, and aponeurosis. While desmoid tumors do not spread to other parts of the body, these tumors can grow into and invade nearby structures and tissues. Depending on where in the body it occurs, a desmoid tumor can compress nerves and blood vessels, obstruct the bowels and bladder, and restrict the movement of joints.
Treatment for desmoid tumors
Treatment for a desmoid tumor will vary from person to person, based on the tumor size, location, symptoms, and potential risk of side effects involved in treatment.
If a tumor is not causing significant symptoms, a healthcare team may recommend active surveillance, where regular imaging tests are used to monitor the tumor’s size. If the tumor grows or causes worsening symptoms, treatment will begin.
Treatment often begins with medications to shrink the tumor, but treatment can also include surgery, other localized therapies, and other types of medications.
A healthcare team will always be your best source of information. Use this list of questions when discussing treatment options with your healthcare providers.
Questions when you are discussing a medication
Targeted therapies are often the first medication prescribed to treat a desmoid tumor. These drugs act on specific molecules found in tumor cells and block the substances and processes tumors need to grow. Chemotherapy and hormone therapy may be recommended if targeted therapies are not effective.
Ask these questions when discussing a medication:
- What is the name of the medication and the dosage?
- Why is this medication recommended?
- How does the medication work?
- How is the medication administered?
- How often will this medication be administered?
- How long will I be taking this medication?
- What is the goal of this therapy? How will we know it is working? How will I be monitored during this part of treatment?
- What are the potential side effects? Is there a risk of serious side effects?
- How will I feel while taking this medication?
- Are there things I will need to avoid while taking this medication, such as certain foods or activities?
- Can this medication interact with other medications or supplements? Always tell your healthcare provider about all medications you are taking, including medications for other conditions, over-the-counter medications, and supplements.
- What will this therapy cost? Who can I talk to if I have concerns about the cost of treatment?
Questions when discussing surgery or another localized therapy
Desmoid tumors can be difficult to completely remove with surgery and have a high rate of recurrence. However, surgery is a valuable treatment option in some circumstances. Other localized therapies like radiation therapy and ablation (using hot or cold to destroy a tumor) are also used in treatment.
Ask these questions when discussing surgery or a localized therapy:
- What is the name of the procedure?
- Why is this treatment recommended?
- What is removed during this procedure? Will I need reconstructive surgery?
- What is the goal of the procedure?
- What are the potential side effects, risks, or complications involved with this procedure?
- Do I need any tests or exams before this procedure?
- What healthcare provider will perform this procedure? How many of these surgeries or procedures have they performed?
- Are there any alternatives to this approach to treatment?
- What will this procedure cost?
- What will the recovery process be like? How long will the recovery process take?
- Who can I talk to if I have concerns about the cost of treatment?
Remember, if you have questions about a diagnosis or treatment, need an explanation, or have concerns, your healthcare provider is your best source of information.
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- NCI Dictionary of Cancer Terms. Tendon. Accessed September 10, 2026.
- Cleveland Clinic. Ligament. March 30, 2025.
- Cleveland Clinic. Fascia. June 14, 2022.
- Cleveland Clinic. Aponeurosis. July 5, 2022.
- NCI Dictionary of Cancer Terms. Dermis. Accessed September 10, 2026.
- Mehmet Ali Kaygin, Ozgur Dag, et al. Extra-Abdominal Fibromatosis (Desmoid Tumor): A Rare Tumor of the Lower Extremity Arising from the Popliteal Fossa. Case Reports in Vascular Medicine. August 21, 2011.
- Samip R. Master, Ankit Mangla, and Chintan Shah. Desmoid Tumor. March 1, 2024.
- National Cancer Institute. Questions to Ask Your Doctor about Treatment. February 22, 2023.
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- Johns Hopkins Medicine. Questions to Ask Before Surgery. Accessed September 10, 2026.
