Getting the right experts on board is a top priority
Facing a desmoid tumor diagnosis and treatment can feel overwhelming. A care team, including expert doctors across different specialties, can help determine the best treatment path for you.
Your care team may include:1,2
- Medical oncologist
- Sarcoma specialist
- Surgeon/surgical oncologist
- Radiologist and/or radiation oncologist
- Primary care physician
- Mental health professional
A Medical Oncologist specializes in diagnosis and treatment of tumors. They will come up with a treatment plan tailored for you. This may include medications to treat your tumor, a discussion around whether surgery is an option you should consider, and/or bringing in other specialists to help assist with your care.3 In some cases, you may want to find a Sarcoma Specialist, an oncologist experienced in treating soft tissue tumors, like desmoid tumors.
You can find a list of sarcoma centers on the website for Sarcoma Alliance for Research through Collaboration (SARC), a non-profit organization.4
Make sure you have a good team around you. My oncologist plays a big part in how I view everything.
Amy, patient with a desmoid tumor
The Surgeon specializes in removing tumors. In most tumor locations, surgery is not always recommended as the first line of treatment by desmoid tumor experts.5 It is recommended that you meet with both a medical oncologist and a surgeon and other members of your multidisciplinary care team. Together, your care team can help determine an individualized treatment plan for you.
You may want to ask your medical oncologist to speak with your surgeon to discuss if surgery is the right path for you.
The Radiologist specializes in interpreting medical imaging, like MRIs (magnetic resonance imaging), CT (computerized tomography) scans, X-rays, and ultrasounds.1,2 A Radiation Oncologist specializes in treating tumors with radiation therapy.1
The Pathologist examines body tissues, like from a biopsy, under a microscope and performs lab tests to help determine your diagnosis.1,2
Primary care physician (PCP)
The PCP whom you see for routine physical exams should be kept in the loop and informed about your health. Your PCP may be one of the first doctors you speak to about a potential desmoid tumor.1,6 If your PCP is unsure about whether you have a desmoid tumor, you can ask them to help identify other care team members to support a clear and timely diagnosis.
Nurses may give physical exams, provide chemotherapy or other medications, identify needs, coordinate care with other members of the team, and educate people living with desmoid tumors and families about the disease.1,2
Mental health professional
Some people may also find it helpful to have a Mental Health Professional (psychiatrist, psychologist, social worker, or licensed counselor) to speak with. Counseling can help you understand your feelings and reactions. And if you’re feeling worried or down, a safe place to talk is always a good thing.7,8
Short- or long-term pain management can also be a concern for people living with a desmoid tumor. Whether it’s related to treatment or to the tumor itself, speak with your care team about any pain you are experiencing. They can help you create a pain management plan or refer you to a doctor who specializes in coping with pain.1,9
I would advise people to get a second or third opinion. This is your life. Go find the best care.
Brad, patient with a desmoid tumor
Knowing what to ask your doctor can help you get appropriate care
To help you prepare for the discussion with your doctor, download these questions in the discussion guide below. You may want to bring it with you to help guide your conversation.
Here are a few ideas for questions you may want to ask your doctor
If you or your doctor think you may have a desmoid tumor, consider asking:
- What is a desmoid tumor?
- What are the risk factors associated with desmoid tumors?
- What are the signs and symptoms of desmoid tumors?
- How do you test for a desmoid tumor? Can a biopsy determine if I have a desmoid tumor?
- Are there doctors who specialize in treating desmoid tumors? How do I find a desmoid tumor specialist?
If you have been diagnosed with a desmoid tumor, consider asking:
- Can desmoid tumors grow or extend into other parts of my body?
- How will a desmoid tumor impact my life—physically, socially, and emotionally?
- Is there a cure for desmoid tumors?
- Is surgery an option for desmoid tumors?
- What are the risks of surgery?
- Can my desmoid tumor come back after it’s been removed?
- What kinds of specialists should I consult with? Are there hospitals or health centers that specialize in desmoid tumor treatment?
- Are there treatment options available? What are the risks and benefits?
To help you prepare for the discussion with your doctor, download these questions in the discussion guide below and bring it with you to help guide your conversation.
SpringWorks Therapeutics is providing this link to help patients find a sarcoma specialist by region, but SpringWorks had no role in developing this list and inclusion on this list does not represent an endorsement or a recommendation from SpringWorks for any center or physician.
- Referenced with permission from the NCCN Guidelines for Patients® for Soft Tissue Sarcoma, V.1.2020. © National Comprehensive Cancer Network, Inc. 2020. All rights reserved. Accessed August 4, 2022. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use, or application, and disclaims any responsibility for their application or use in any way.
- Cancer.Net. The oncology team. Accessed April 16, 2022. https://www.cancer.net/navigating-cancer-care/cancer-basics/cancer-care-team/oncology-team.
- Cancer.Net. Types of oncologists. Accessed November 18, 2022. https://www.cancer.net/navigating-cancer-care/cancer-basics/cancer-care-team/types-oncologists.
- SARC (Sarcoma Alliance for Research through Collaboration). About SARC. Accessed April 16, 2022. https://sarctrials.org/about-sarc.
- Gronchi, A, et al. Desmoid Tumor Working Group. The management of desmoid tumours: a joint global consensus-based guideline approach for adult and paediatric patients. Eur J Cancer. 2020;127:96-107.
- Nekhlyudov L, Latosinsky S. The interface of primary and oncology specialty care: from symptoms to diagnosis. J Natl Cancer Inst Monogr. 2010;2010(40):11-17.
- Cancer.Net. Counseling. Accessed April 16, 2022. https://www.cancer.net/coping-with-cancer/finding-social-support-and-information/counseling.
- Granek L, Nakash O, Ariad S, et al. Strategies and Barriers in Addressing Mental Health and Suicidality in Patients With Cancer. Oncology Nursing Forum. 2019;46(5):561-571.
- Cancer.Net. Treating pain with medication. Accessed April 16, 2022. https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/pain/treating-pain-with-medication.