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This article will describe the types of health care professionals who treat desmoid tumors and explain how to find providers with expertise in managing desmoid tumors to care for you.
Working with a team of health care providers that have different types of expertise is sometimes called multidisciplinary care. These doctors, nurses, and other medical professionals work together to develop a treatment plan that’s tailored to you.2 A multidisciplinary team with experience managing desmoid tumors can help ensure that you get the best care possible.3
Some doctors who specialize in treating desmoid tumors are sarcoma specialists, which are described in more detail below. These doctors are found at sarcoma centers and other large academic medical centers.1 If you live far from a sarcoma center, you might first travel to see a desmoid specialist care team and then receive continuing care from a health care team closer to home.4
Specialist Care Team
Your team may include doctors such as the following:
Sarcoma Specialist A sarcoma specialist treats sarcomas — rare cancer types that form in muscle, blood vessels, nerves, and fat (soft or connective tissue). This type of doctor also treats desmoid tumors, which can affect the same tissues as sarcomas.1
Medical Oncologist A medical oncologist is a doctor who treats cancers and certain other rare diseases, using different therapies.5 A medical oncologist may be the leader of your care team.4
Radiation Oncologist A radiation oncologist uses radiation therapy to treat cancer and other diseases. If radiation therapy is an option for you, a radiation oncologist is the expert who will initiate and plan the therapy to treat your desmoid tumor.4
Surgeon/Surgical Oncologist The surgeon on your care team is the expert who surgically removes desmoid tumors, only if it is clinically appropriate.4 Surgeons may also take biopsies (tissue samples to be examined) to diagnose diseases.6 Surgery is no longer recommended by guidelines as the first approach for treating desmoid tumors for most clinical situations, but it may be appropriate depending on the location of your tumor and other factors.1,4 It may be helpful to find a surgeon who has experience in desmoid tumors.3 The decision to surgically remove a desmoid tumor should be made by a multidisciplinary team.4
Pathologist A pathologist specializes in diagnosing diseases and may look at a biopsy of tumor cells to confirm your desmoid tumor diagnosis.5 A pathologist with expertise in soft tissue tumors can help ensure you get an accurate diagnosis.7 You may never meet your pathologist — these doctors often work behind the scenes with the multidisciplinary teams.8
Advanced Practice Providers Nurse practitioners (NPs) and physician assistants (PAs) may meet with you as part of the care team. They collaborate with the different members on your desmoid care team.4 |
Continuing Care Team
Desmoid tumor care may require long-term care. These health care providers may be involved in your ongoing care:
Community Oncologist If you don’t live near a sarcoma center, it may be possible for your local community oncologist to work with desmoid tumor specialists to create a care plan for you. This would allow you to receive care closer to home and minimize travel to a sarcoma center.4 Your desmoid tumor care team and your local health care provider can help you understand how this process might work.
Primary Care Provider Your primary care provider supports your overall health, so it’s important to continue seeing them even as you receive care from your multidisciplinary team.9
Nurses Nurses are a crucial part of any health care team. They offer support by5:
Other Team Members Pharmacists, social workers, physical therapists, mental health professionals, and others may also be part of your team.5 |
Desmoid tumors are rare, and your doctor may not have experience treating or diagnosing desmoid tumors. A health care provider who doesn’t have desmoid tumor expertise may not be familiar with the most recent research or treatment guidelines. Seeking out a specialist with relevant experience for a second opinion can help ensure you get an accurate diagnosis and the best guidance on treatment options.7
In an interview with the Desmoid Tumor Research Foundation (DTRF), sarcoma specialist Dr. Candace Haddox of the Dana-Farber Cancer Institute in Boston shared several reasons you might want a second opinion, as summarized below10:
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.”10
Dr. Haddox explained that you can ask your doctor to refer you to a desmoid tumor specialist. Another option is to search for virtual second opinions. Many large cancer centers and sarcoma centers offer this as an option for certain conditions.10
If you are not currently connected with a desmoid tumor specialist, your care team may be able to refer you to a sarcoma specialist.
You can also look online to find a specialist. Below are some resources* for finding doctors or hospitals with desmoid tumor expertise:
*These resources are provided to help people find more information about desmoid tumors, but inclusion on this list does not represent an endorsement or a recommendation.
You can also use a search engine — type in “sarcoma center” and your location.
It can be daunting to think about leaving home for health care. The DTRF offers a comprehensive list of resources that may be helpful if you need to travel for your treatment.14
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Dale Shepard, M.D., Ph.D., FACP
is a medical oncologist and consultant of SpringWorks Therapeutics, Inc., serving as the director of the Taussig Cancer Institute Phase 1 Program.
Learn more about him here.
Alison Channon
has nearly a decade of experience writing about chronic health conditions, mental health, and women's health.
Learn more about her here.
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