Short answer · Medically reviewed summary · Last updated: 2026-05-08
The ICD-10 code for a Desmoid Tumor (also known as desmoid-type fibromatosis) is D48.1, classified under "Neoplasm of uncertain behavior of other and unspecified sites." Under the older ICD-9-CM system, Desmoid Tumor was categorized under code 215.2 (Other benign neoplasm of connective and other soft tissue of abdomen) or 215.9 depending on the specific anatomical location. What exactly is a Desmoid Tumor? A Desmoid Tumor is a rare, locally aggressive soft tissue growth that arises from connective tissue. While they do not metastasize like malignant cancers, Desmoid Tumor growths are known for their ability to infiltrate surrounding structures, particularly in the digestive system and abdominal wall.
ICD10 code of Desmoid Tumor and ICD9 code
ICD-10 and ICD-9 codes for Desmoid Tumor, with classification details for clinicians, coders and patients.
The ICD-10 code for a Desmoid Tumor (also known as desmoid-type fibromatosis) is D48.1, classified under "Neoplasm of uncertain behavior of other and unspecified sites." Under the older ICD-9-CM system, Desmoid Tumor was categorized under code 215.2 (Other benign neoplasm of connective and other soft tissue of abdomen) or 215.9 depending on the specific anatomical location.
What exactly is a Desmoid Tumor?
A Desmoid Tumor is a rare, locally aggressive soft tissue growth that arises from connective tissue. While they do not metastasize like malignant cancers, Desmoid Tumor growths are known for their ability to infiltrate surrounding structures, particularly in the digestive system and abdominal wall. Because they are often hormone-sensitive, particularly to estrogen, treatments like the Tamoxifen, Megestrol, and Zolodex regimen you are currently undergoing are frequently utilized to suppress tumor progression.
How is a Desmoid Tumor diagnosed and classified?
Diagnosis typically involves imaging (MRI or CT) followed by a core needle biopsy to confirm the histopathological features. Because Desmoid Tumor cases are rare, involving approximately 2 to 4 people per million annually, it is essential to consult with specialized centers. Clinicians categorize these tumors based on their anatomical involvement:
- Abdominal: Occurring within the abdominal wall musculature.
- Intra-abdominal: Involving the mesentery or pelvic cavity, often affecting the digestive system.
- Extra-abdominal: Located in the extremities, chest wall, or head and neck regions.
How does the DiseaseMaps community support those with this condition?
Living with a Desmoid Tumor can be physically and emotionally taxing due to chronic pain and the uncertainty of tumor growth. Currently, 50 members of the DiseaseMaps community have shared their experiences with this diagnosis. Connecting with others through our platform can provide invaluable peer support for navigating the complexities of long-term hormonal therapies and surgical consultations.
Next steps
- Consult with a specialized sarcoma oncologist or a colorectal surgeon experienced in managing Desmoid Tumor cases.
- Keep a detailed log of your pain levels and treatment side effects to share with your gastroenterology or oncology team.
- Join the DiseaseMaps community to discuss treatment experiences with the 50 other members managing this condition.
- Request a referral to a palliative care specialist if pain management remains a significant barrier to your quality of life.
Medical disclaimer: This information is for educational purposes only and should not replace professional medical advice, diagnosis, or treatment; always seek the guidance of your physician regarding your specific medical condition.
References
- NIH Genetic and Rare Diseases Information Center (GARD): Desmoid tumor.
- Orphanet: Desmoid-type fibromatosis (ORPHA: 345).
- The Desmoid Tumor Research Foundation (DTRF).
- OMIM (Online Mendelian Inheritance in Man): Fibromatosis, Desmoid-Type.
