You may not have heard of desmoid tumor before your diagnosis. So what happens next? One of your first steps involves connecting with the right healthcare team.

This article explains which healthcare professionals are often involved in managing these rare tumors. You’ll also learn why finding the right team of specialists is important for managing the disease.

Who Might Be on Your Healthcare Team

Working with a team of healthcare providers with different types of expertise is sometimes called multidisciplinary care. These doctors, nurses, and other professionals work together to develop a treatment plan tailored to you. A multidisciplinary team with experience managing desmoid tumor can help you get the best care possible.

Some doctors who treat desmoid tumor are sarcoma specialists, described below. These doctors are found at sarcoma centers and other large academic medical centers. If you live far from a sarcoma center, you may travel to see a desmoid tumor specialist first, then receive follow-up care closer to home.

When You Might Want a Second Opinion

Desmoid tumor is rare, and your doctor may not have experience diagnosing or treating this condition. A healthcare provider without desmoid tumor expertise may not be familiar with the latest research or treatment guidelines. Getting a second opinion from a specialist can help confirm your diagnosis and guide your treatment options.

In an interview with the Desmoid Tumor Research Foundation, Dr. Candace Haddox, a sarcoma specialist with Dana-Farber Cancer Institute, shared reasons you might consider a second opinion:

• Your doctor or treatment center doesn’t have desmoid tumor expertise.
• Your doctor recommends aggressive surgery.
• Your doctor recommends medication, but you don’t have symptoms.
• You have questions about whether your diagnosis is correct.
• You want more information to feel confident in your care.

You don’t have to feel guilty about seeking a second opinion. “It’s your journey. You have to feel comfortable with the plan,” Dr. Haddox said. “You should feel comfortable talking to your doctor about a second opinion, and they should also be supportive.”

You can ask your doctor for a referral to a desmoid tumor specialist, Dr. Haddox said. You can also look into virtual second opinions. Many large cancer centers and sarcoma centers offer this option for some conditions.

How To Find Specialist Care for Desmoid Tumor

If you’re not already seeing a desmoid tumor specialist, your care team may be able to refer you to a sarcoma specialist.

You can also search online to find a specialist. These resources can help you find doctors or hospitals with experience in desmoid tumor:

• Desmoid Tumor Research Foundation — Offers guidance on finding specialists for desmoid tumor
• Sarcoma Alliance — Provides a list of sarcoma centers in the U.S. and internationally
• Sarcoma Alliance for Research Through Collaboration — Lists hospitals with sarcoma expertise

You can also use a search engine to find medical treatment. Try typing “sarcoma center” along with your location.

Traveling for Desmoid Tumor Treatment

Traveling for healthcare can feel overwhelming. The DTRF offers a list of resources that may help if you need to travel for your treatment.

Join the Conversation

On MyDesmoidTumorTeam, people share their experiences with desmoid tumors, get advice, and find support from others who understand.

Which specialists do you see for desmoid tumors? Let others know in the comments below.