In honor of Halloween, I wanted to address some of the scary myths we face as Desmoid Fibromatosis patients. These myths come from misinformation and lack of knowledge on the topic due to how rare of a disease it is. They can really “haunt” a patient who is living through them.
Surgery to Remove the Tumor is the Best Treatment – This is not the case. More patients and doctors alike are agreeing that surgery should be the last option when it comes to treating Desmoid Tumors. The recurrence rate of desmoid tumor after surgery is often as high as 30%. Not only do these invasive monsters grow back, they come back more aggressive than when they first appeared. Often times this leads to multiple surgeries and more complications for the patient.
There is a Cure for Desmoid Tumors – While there are multiple treatment options available to shrink Desmoid’s such as watch and wait, radiation and chemotherapy, there is no cure for this type of tumor, yet. Overall, about 12% regress, 7% are lethal, and the remainder never disappear, but rather grow and shrink to a small extent
Because They are Benign, They Can’t Be Fatal – While they do not come back in a pathology report as malignant, Desmoid Tumors can be invasive and in some cases life threatening. Desmoids can create a home in any part of the body including limbs, which can drastically change the quality of a patients life. Desmoids deep inside the abdomen or pelvis can also be entirely without symptoms or they can cause bloating, severe pain, rupture of intestines, compression of the kidneys or ureters or rectal bleeding. If a tumor grows into or intertwines with a major organ, making surgery or treatments unsuccessful it can be fatal.
You Can Not Have More Than One Desmoid Tumor – While most patients are fortunate enough to only have one Desmoid Tumor, some have developed multiple tumors over time.
All Patients who Have Desmoid Tumors Have FAP (familial adenomatous polyopsis) – While patients with FAP are at a very high risk of developing desmoid tumors the majority of Desmoid Tumors have them sporadically. Desmoid tumors are rare, affecting an estimated 1 to 2 per 500,000 people worldwide. In the United States, 900 to 1,500 new cases are diagnosed per year. Sporadic desmoid tumors are more common than those associated with familial adenomatous polyposis.
Desmoid Tumors are Painless – While most patients wish this were true, it is not. These tumors can grow very aggressively which invade surrounding nerve tissue and muscle. In some patients, pain can be so severe they have to seek pain management treatments.
There is still so much to learn about this rare disease. In the United States, approximately 900 people are diagnosed with Desmoid Tumors every year. While we have come a long way in research and knowledge of Desmoid’s, we still have yet to find a cure and so much to learn. If you’d like to donate to Desmoid Research you can do so by clicking here.