1. What Types of Doctors Might Be Involved in My Care?

Your team of health care providers may include a medical oncologist (cancer doctor), a surgeon, a radiologist, a pathologist, and nurses. Your care team should include different types of doctors who have experience treating desmoid tumors.^1,2

Your care team may include doctors called sarcoma specialists. A sarcoma specialist is a doctor with expertise in treating cancer and other types of tumors in the connective tissue. Sarcoma specialists can also be experts at treating desmoid tumors.² They often practice at sarcoma centers and large academic medical centers.³ It’s important to be cared for by experts because desmoid tumors are rare. Many health care providers may not have experience diagnosing or treating these tumors.³ Your local oncologist may be able to refer you to a sarcoma center.

2. What Might I Expect From Desmoid Tumor Treatment?

Desmoid tumor management varies from person to person.⁴ It’s important to understand why your health care team is recommending a certain approach and what the goals of care are.¹ This will help you have an informed conversation about your management plan.

For some people diagnosed with desmoid tumors, the management team may initially recommend active surveillance. Active surveillance (watch and wait) means you’ll have regular appointments with your health care team to check on the size of your tumor and symptoms related to your desmoid tumors. You’ll likely have imaging tests as part of active surveillance. Examples of imaging tests include magnetic resonance imaging (MRI) and computed tomography (CT) scans.²

If the tumor grows quickly, your symptoms get worse, or the tumor is in a critical location, your doctor may decide to begin active treatment. They may recommend medical therapy like targeted therapy or chemotherapy to shrink your tumor.¹ Targeted therapies block, or “target,” abnormal proteins in cancer cells and have fewer effects on healthy tissues and cells.⁵ Targeted therapies include tyrosine kinase inhibitors and gamma secretase inhibitors.¹

Chemotherapy drugs block rapidly dividing cells in the body to slow tumor growth. There are several chemotherapy drugs that your care team may consider.¹

Your health care team may also recommend nonsteroidal anti-inflammatory drugs (NSAIDs) to help manage pain.¹ Other possible treatments include radiation therapy, surgery, and cryoablation (using extreme cold to destroy a tumor).¹

Participating in a research study may also be an option. You may want to ask your care team about investigational therapies being studied in clinical trials and whether you may be a good candidate for a clinical trial.¹

3. How Long Will My Treatment Last?

When first starting a new treatment, you’ll likely want to know how long you’ll take it. Treatment duration with medical therapies is variable and depends on many factors.⁴ For example, chemotherapy is typically given for a set number of days or weeks per cycle.¹ You may need multiple treatment cycles to shrink your desmoid tumor.⁴

If your care team is recommending other treatment options, such as surgery, radiation, or cryoablation, they’ll explain what you might expect. They can also talk to you about recovery time after surgery or cryoablation. In the case of radiation, your care team will let you know how many sessions to expect and how long each will last.¹

If you’re interested in a clinical trial, the research team will first explain exactly what the study involves and if you’re eligible to participate. The amount of time you must commit will vary depending on the study. You can decide to leave a clinical trial at any time.⁶

Talk with your care providers about the time commitment of your treatment so you can plan your schedule accordingly.

4. How Often Will I Have Doctors’ Appointments?

You’ll also want to ask your care team how often they need to see you during treatment. How frequently you visit the doctor will likely depend on your type of desmoid tumor treatment, among other factors.

If you’re located far from a sarcoma center, your specialist care team may team up with a local oncologist or other specialist to manage your care.¹ You can work with your desmoid tumor specialist team and your local doctor to determine if an appointment can happen near your home or if you need to travel.

5. What Are the Potential Side Effects of Treatment?

Once you and your doctor agree on a treatment plan, be sure to ask about potential side effects.¹ Your doctor can tell you which side effects are common and which may be managed with dose modifications, over-the-counter medications, or lifestyle modifications and which may require a doctor’s appointment or emergency care.^5,7

You might find it useful to take note of potential side effects throughout your treatment.⁸ Reach out to your health care team with questions or concerns about side effects.⁵

6. How Can I Track My Treatment Journey?

It may be helpful to track possible side effects so that you can tell your doctor what you’re experiencing.⁸ Your doctor may have recommendations to help you manage certain side effects you may experience, which could include nausea, diarrhea, rash, and others. They may recommend dose modifications with your current medical therapy and other prescription or over-the-counter medications to help reduce the severity of these side effects.^5,7

You can track your treatment journey using pen and paper. You can also track it digitally by taking notes on your computer or using a smartphone app.

7. What Kind of Follow-Up Care Will I Need?

After you’ve completed your desmoid tumor treatment, you may need follow-up care. Your doctor may suggest ongoing monitoring to check for any new tumor growth. You’ll likely need a regular physical exam, which may also include imaging tests and blood work. The exact follow-up care you’ll need depends on your treatment plan and your specific condition.^1,9

It’s also important to continue monitoring your symptoms, even after you’ve completed a treatment plan. New or worsening symptoms could be a sign that your tumor is growing or has returned. Let your care team know if you’ve noticed a change in your symptoms.¹

You can track your symptoms in a journal or digitally. Ask your care team if they have any recommendations for symptom-tracking apps.

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