About Desmoid Tumors


Desmoid tumor tissue under a microscope. Pretty, huh?


What’s Desmoid-Type Fibromatosis?

Desmoid-Type Fibromatosis is a rare disease which only impacts around 2 – 4 in a million people. The World Health Organization defines them as “an intermediate grade, non-metastasizing soft tissue sarcoma.” It impacts females more frequently and occurs most often in the abdominal area. In the United States, only 900 cases a year are diagnosed.

Is it cancer?

Whether or not desmoid tumors are considered “cancer” is a bit of a debated issue. My own team of doctors disagrees slightly on whether or not to call it cancer. Although in decades past, Desmoid Tumors have been classified as soft tissue sarcomas, and some sources still do, most sources online state that desmoid tumors are benign. As I mentioned above, The World Health Organization considers it such. Desmoid tumors do not metastasize in the way that other cancers do; however, they can be locally aggressive and has a high rate of recurrence. For these reasons, desmoid specialists treat it just like cancer, ideally by sarcoma specialists, with treatments ranging from chemotherapy to hormone therapy. My thoracic surgeon was clear and honest in that he considers my tumor malignant and cancerous.

I consider my disease cancer because it is a word that others can relate to and communicates the intensity of my treatment. The word “benign” can imply that nothing needs to be done about a tumor, which is not true. Additionally, there have been legal issues in the past when Desmoid Tumor patients have been denied access to Social Security, etc. due to the “benign” classification.

My Desmoid Tumor

My tumor is in my chest wall, behind my pectoralis and my right clavicle. As of April 2019, it’s about the size of a grapefruit. Because the categorization and location are rarer, and under a microscope, the cells look pink and blue, I consider myself “a unicorn!” I am currently receiving treatment at the University of Pennsylvania from a great team of five specialists.

How do Desmoid Tumors form?

See this great explanation below from dtrf.org:

We think desmoid tumors arise from cells called fibroblasts or myo-fibroblasts.  Fibroblast is a type of cell that is found throughout our body from head to toe and is critical to keeping the entire structure of our body intact.  They are the structural (scaffold) support for all our vital organs (e.g. lung, liver, blood vessels, heart, kidneys, skin, intestines etc). Without fibroblasts we just cannot survive.

Fibroblasts are also involved in wound healing. For example, when we cut ourselves, the fibroblasts start growing and multiplying to heal the wound. Once the wound is healed, normal fibroblasts return to their resting state. We think mutations in the DNA (which make up our genes) cause the fibroblasts to behave abnormally and turn into desmoid tumors.



Desmoid Tumor Research Foundation

Desmoid Tumor Research Foundation Facebook Page

Run for Answers 5k/Walk

American Cancer Society – What Is a Soft Tissue Sarcoma?