Desmoid tumors are rare tumors that require care from an experienced specialist. Unfortunately, many people searching for a sarcoma specialist — an oncologist specializing in desmoid tumors — may not be able to find one in their area.

Depending on where you live, it may be necessary to travel in order to receive proper medical care. However, traveling to consult with a specialist can present unique challenges. Fortunately, support networks are available to assist you.

Why Travel for Desmoid Tumor Treatment?

Desmoid tumors form in the body’s connective tissue. They typically occur inside the abdomen, in the arms and legs, and sometimes in the head and neck. These rare soft tissue tumors only occur in an estimated 5 to 6 of every 1 million people per year. Desmoid tumors are so rare that many health care providers have never seen the condition.

Consulting with health care providers who lack specific expertise may result in a delayed diagnosis, incorrect diagnosis, or incorrect referrals. This knowledge gap regarding desmoid tumors makes finding the right specialists especially important.

Unfortunately, when it comes to finding the right doctor, many people living with suspected or diagnosed desmoid tumors aren’t sure where to start. One MyDesmoidTumorTeam member commented: “I was diagnosed last week. There is not a specialist in my area. What kind of doctor should I see for treatment?”

Finding a Sarcoma Specialist

In order for people living with desmoid tumors to be properly evaluated and treated, they should consult with a multidisciplinary care team at a sarcoma center. A multidisciplinary team for desmoid tumor will include sarcoma specialists as well as other oncology providers with different areas of expertise. Sarcoma specialists treat a type of cancer called sarcomas. While desmoid tumors are not cancer, they develop in the same areas of the body as sarcomas.

The Sarcoma Alliance for Research Through Collaboration (SARC) offers an online map that can help you locate a sarcoma specialist near you. However, sarcoma specialists are often found at major academic medical centers, which means many people with desmoid tumors will have to travel to see their specialist.

Resources for Travel Support

Arranging travel under any circumstances can be stressful, and coordinating travel for medical care may feel daunting. Many organizations recognize the financial, mental, and emotional burden of traveling to receive medical care, and these organizations exist to support you.

Paying for Medical Care

The financial burden of traveling for medical treatment may seem overwhelming to some people living with desmoid tumors. People may be worried about hospital expenses or losing their jobs due to travel, among other concerns.

Before you travel for a medical appointment, make sure to check with your insurance company about your plan’s coverage. Your insurance company can help you understand whether your out-of-state or out-of-network care will be covered by your plan. You may need preauthorization or precertification from your insurance company so they will cover the medical care you plan to travel for.

Many charitable organizations exist to help offset the financial burden of having to pay for expensive medical treatment, and they may be able to provide you with financial assistance. Financial aid may be available to you for uncovered insurance expenses, such as premiums, deductibles, or prescription drug costs. The Desmoid Tumor Research Foundation keeps an updated list of organizations you can reach out to for support.

Paying for Travel and Accommodations

When traveling for medical treatment, expenses can add up quickly. Besides paying for treatment, traveling to your doctor involves transportation expenses and, often, accommodation expenses. Fortunately, there are resources available to help reduce this financial impact.

Several organizations exist to help offset the costs of traveling for medical treatment. These organizations offer free or discounted travel and lodging to people living with desmoid tumors who are seeking medical treatment and support. If you are traveling for a second opinion on your diagnosis, you may be eligible for a grant to reimburse your travel and related expenses.

Support While You’re Out of Town

Traveling for medical care can also require coordinating coverage of household responsibilities while you’re away. When you’re out of town, you may need to find care for your children or pets, as well as coverage for any number of tasks you normally manage.

Try to keep a list of people you can go to for help. Though it may seem burdensome to ask for assistance, family, friends, and neighbors are often happy for a chance to help.

Depending on where you live, local options may exist for meal delivery or preparation, grocery delivery, or pet care. If you’re unaware of local service offerings, ask your health care provider or social worker what services are available near you.

Social Workers and Patient Navigators

Your cancer center may have social workers on staff who can help you navigate desmoid tumor treatment. These professionals are very knowledgeable about patient and caregiver resources. A social worker may be able to help you with:

• Referrals to financial aid organizations
• Transportation to your treatment
• Information about support groups

Like social workers, patient navigators can help you find what you need during your treatment. Patient navigators offer support to those living with desmoid tumors, their families, and their caregivers. The aim of patient navigation is to help coordinate timely access to high-quality health care by helping people overcome barriers within the health care system. You may have access to patient navigation services through your health care provider.

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.

Are you living with desmoid tumors? Share your experience in the comments below, or start a conversation by posting on your Activities page.