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PubMed This is a summary of 22 peer-reviewed journal articles Updated
Interventional Radiology · Lymphatic Malformation

Building Your Care Team

At a Glance

Because lymphatic malformations are rare and complex, they are best treated by a multidisciplinary vascular anomalies team. Essential specialists include interventional radiologists, ENTs, and hematologist/oncologists who collaborate to provide both minimally invasive procedures and medical therapies.

Because lymphatic malformations (LMs) are rare and complex, they are best managed by a multidisciplinary team (MDT) [1][2]. Rather than seeing one doctor who tries to do everything, an MDT consists of several specialists who combine their expertise to create a tailored treatment plan [3][4].

The Core Specialists

A high-level vascular anomalies team usually includes the following experts:

  • Interventional Radiologist (IR): This specialist uses advanced imaging to perform minimally invasive procedures [5]. They are usually the ones who perform sclerotherapy (injecting medicine to shrink cysts) [6].
  • Otolaryngologist (ENT): If the LM is in the head or neck, a pediatric ENT is essential for monitoring the airway and managing any issues with swallowing or speech [7][8].
  • Hematologist/Oncologist: While LMs are not cancer, these specialists are experts in the “blood and lymph” system [9]. They often manage medications like sirolimus and monitor for potential side effects [5][10].
  • Geneticist: They help identify the specific genetic “glitch” (like a PIK3CA mutation) causing the malformation, which can help determine if targeted therapies will work [9][11].
  • Pediatric Surgeon: A surgeon is part of the team to evaluate if the malformation can be safely removed through operative excision [5][6].

Preparing for Your First Visit

The first visit to a vascular anomalies center is often long and information-heavy. To make the most of it, you should bring the following “artifacts” [12][13]:

  1. Imaging on a CD/Link: Do not rely on the new hospital to be able to “pull up” scans from your local clinic. Bring the actual images (MRI, Ultrasound) and the written radiologist reports [13][14].
  2. Growth Timeline: Document when you first saw the mass, how quickly it has grown, and if it changes size during a cold or fever [15][16].
  3. Photos: If the malformation swells or changes color during “flare-ups,” bring photos of those moments to help the team see the range of the condition [15].

How to Evaluate a Team

Not all hospitals have the same level of experience with LMs. When vetting a center, look for these markers of expertise:

  • Volume: Ask how many cases like your child’s they see per year [17]. Experience matters in rare disease.
  • Collaboration: Does the team meet formally (often called a “Case Conference”) to discuss patients, or will you have to coordinate between doctors yourself? [18][19].
  • Cutting-Edge Options: Does the center have access to clinical trials or the newest “targeted” medications? [20][21].

Finding the right team may take time, but having a group of experts who understand the nuances of LMs is the best way to ensure your child receives coordinated, effective care [2][22].

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Common questions in this guide

What kind of doctors treat lymphatic malformations?
Lymphatic malformations are complex and best managed by a multidisciplinary team. This typically includes an interventional radiologist, pediatric otolaryngologist (ENT), hematologist or oncologist, geneticist, and a pediatric surgeon.
What should I bring to our first vascular anomalies clinic visit?
Bring physical copies of all imaging, such as MRIs or ultrasounds on a CD or digital link, along with written radiologist reports. It is also helpful to provide a timeline of the malformation's growth and photos of any swelling or flare-ups.
How do I know if a hospital has enough experience with lymphatic malformations?
Ask how many lymphatic malformation cases the center treats each year and if they hold formal case conferences. High-volume centers with dedicated multidisciplinary teams and access to the latest clinical trials generally offer the most effective care.
Who manages medical treatments like sirolimus for my child's malformation?
Hematologists or oncologists typically prescribe and manage medications like sirolimus. Even though lymphatic malformations are not cancer, these specialists are experts in treating disorders of the blood and lymphatic systems.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Do you have a formal Vascular Anomalies Clinic where all the specialists discuss my child's case together?
  2. 2.How many children with lymphatic malformations do you treat every year?
  3. 3.Who is our primary 'navigator' or point of contact if we have questions about coordinating care?
  4. 4.Does your team have experience using targeted medical therapies like sirolimus or alpelisib?
  5. 5.What is your team's protocol for managing an emergency flare-up after hours or on weekends?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (22)
  1. 1

    Clinical and surgical effectiveness of the multi-disciplinary standardized management model in the treatment of retroperitoneal liposarcoma: Evidence-based clinical practice experience from Fudan Zhongshan.

    Fan P, Tao P, Wang J, et al.

    Surgery 2024; (175(5)):1368-1376 doi:10.1016/j.surg.2024.01.012.

    PMID: 38395638
  2. 2

    Lymphatic and Mixed Malformations.

    Hathaway BA, Radu S, Wilson J, Nauta AC

    Lymphatic research and biology 2021; (19(1)):41-50 doi:10.1089/lrb.2020.0100.

    PMID: 33493408
  3. 3

    An Exploration of Multidisciplinary Team Care With Digital Technology for Complicated Cranio-Maxillofacial Bone Defects and Fractures.

    Liu Y, Wang Y, He X, et al.

    The Journal of craniofacial surgery 2020; (31(7)):1914-1919 doi:10.1097/SCS.0000000000006674.

    PMID: 32890150
  4. 4

    Lymphatic malformations: a 20-year single institution experience.

    Kronfli AP, McLaughlin CJ, Moroco AE, Grant CN

    Pediatric surgery international 2021; (37(6)):783-790 doi:10.1007/s00383-021-04859-5.

    PMID: 33586010
  5. 5

    Multidisciplinary Care: Facial Reanimation in the Pediatric Population.

    Mohan VC, Akram M, Belfort BD, et al.

    Seminars in plastic surgery 2025; (39(2)):75-81 doi:10.1055/s-0045-1808271.

    PMID: 40406640
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    The Multidisciplinary Team in Head and Neck Cancer Reconstruction: A Reference Manual for the Plastic Surgeon.

    Belfort BDW, Owens WR, Leonovicz OG, et al.

    Seminars in plastic surgery 2025; (39(2)):103-112 doi:10.1055/s-0045-1808273.

    PMID: 40406636
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    Lymphangiomatosis with pulmonary, mediastinal, and spinal involvement in a pediatric patient: a case report.

    Sun Y, Zhou J, Hu X, et al.

    BMC pediatrics 2025; (25(1)):527 doi:10.1186/s12887-025-05884-2.

    PMID: 40615978
  8. 8

    Treatment of giant cervico-mediastinal lymphatic malformations: a case series.

    Nam SH, Kwon KA

    Journal of medical case reports 2018; (12(1)):167 doi:10.1186/s13256-018-1705-0.

    PMID: 29903033
  9. 9

    Genomic multidisciplinary teams: A model for navigating genetic mainstreaming and precision medicine.

    Ma A, Newing TP, O'Shea R, et al.

    Journal of paediatrics and child health 2024; (60(4-5)):118-124 doi:10.1111/jpc.16547.

    PMID: 38605555
  10. 10

    Efficacy and safety of sirolimus in the treatment of vascular anomalies: A systematic review.

    Freixo C, Ferreira V, Martins J, et al.

    Journal of vascular surgery 2020; (71(1)):318-327 doi:10.1016/j.jvs.2019.06.217.

    PMID: 31676179
  11. 11

    Dysfunctional mechanotransduction regulates the progression of PIK3CA-driven vascular malformations.

    Aw WY, Sawhney A, Rathod M, et al.

    bioRxiv : the preprint server for biology 2024; doi:10.1101/2024.08.22.609165.

    PMID: 39229154
  12. 12

    Vascular malformations: classification, diagnosis and treatment.

    Carqueja IM, Sousa J, Mansilha A

    International angiology : a journal of the International Union of Angiology 2018; (37(2)):127-142 doi:10.23736/S0392-9590.18.03961-5.

    PMID: 29424187
  13. 13

    Contemporary Management of Vascular Anomalies of the Head and Neck-Part 1: Vascular Malformations: A Review.

    Gallant SC, Chewning RH, Orbach DB, et al.

    JAMA otolaryngology-- head & neck surgery 2021; (147(2)):197-206 doi:10.1001/jamaoto.2020.4353.

    PMID: 33237296
  14. 14

    Patient characteristics and disease spectrum in a German vascular anomalies center.

    Strübing F, Laurich A, Weiss C, et al.

    Acta radiologica (Stockholm, Sweden : 1987) 2024; (65(1)):145-151 doi:10.1177/02841851231196872.

    PMID: 37743550
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    Congenital Vascular Tumors.

    Goss JA, Greene AK

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    PMID: 29217070
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    Vascular anomalies: clinical perspectives.

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    Complex lymphatic malformations in pediatrics: a review of treatment options.

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    PMID: 35283478
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    An integrated multidisciplinary team approach to the management of vascular anomalies: challenges and benefits.

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    The VASCERN-VASCA working group diagnostic and management pathways for lymphatic malformations.

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This page provides general information about finding specialists for lymphatic malformations. It is not medical advice; always consult a qualified vascular anomalies team for your child's specific care plan.

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