Users' questions

Can you live with a desmoid tumor?

Can you live with a desmoid tumor?

Most desmoid tumors do not impact lifespan but they are very difficult to get rid of and can be painful to live with. Desmoid tumors growing in the abdomen can cause problems, such as blocking your intestines. It is important that your doctor monitor the growth of these tumors carefully.

Is there a cure for desmoid tumors?

Complete surgical excision of desmoid tumors is the most effective method of cure. This sometimes necessitates removal of most of an anterior compartment of a leg. Extensive cases may require excision plus adjuvant treatment including chemotherapy and repeat surgery.

Can a desmoid tumor be fatal?

Desmoid tumors are usually considered benign (not cancer) because they rarely spread to different parts of your body. But ones that grow fast (aggressive tumors) can be like cancer in some ways. They can grow into nearby tissues and can be fatal.

Can a desmoid tumor be removed?

Surgery. If your desmoid tumor causes signs and symptoms, your doctor may recommend an operation to remove the entire tumor and a small margin of healthy tissue that surrounds it. But sometimes the tumor grows to involve nearby structures and can’t be completely removed.

How rare is a desmoid tumor?

Desmoid tumors constitute 0.03% of all tumors. The estimated incidence in the general population is 2-4 per million people per year. Desmoid tumors are observed to be more common in persons aged 10-40 years but can occur in other age groups. Desmoid tumors can commonly occur in women after childbirth.

How do you shrink a desmoid tumor?

Desmoid Tumor: Types of Treatment

  1. Treatment overview.
  2. Active surveillance.
  3. Surgery.
  4. Radiation therapy.
  5. Cryosurgery or cryoablation.
  6. Radiofrequency thermal ablation.
  7. Therapies using medication.
  8. Physical, emotional, and social effects of a tumor.

What do desmoid tumors feel like?

Symptoms may include: Soreness or pain caused by the tumor pressing on nearby nerves, muscles, or blood vessels. Tingling or a feeling of “pins and needles,” when the tumor presses on local nerves or blood vessels. Limping or other difficulties moving the legs or feet.

How fast do desmoid tumors grow?

[11] reported that sporadic postoperative intra-abdominal desmoid tumors can develop 11 months to 7 years after abdominal surgery. In our patient, the desmoid tumor was detected 6 months postoperatively and the new masses were detected 9 months postoperatively.

How do you treat desmoid tumor pain?

Nonsteroidal anti-inflammatory drugs (NSAIDs) can sometimes slowly shrink a desmoid tumor that cannot be surgically removed, as well as relieve associated pain and swelling.

What does a desmoid tumor feel like?

Can desmoid tumors cause pain?

The first sign of a desmoid tumor may be a firm, painless lump or swelling in the arms, legs, chest, neck, or abdomen. Sometimes, the lump is painful. Most lumps are not a desmoid tumor.

How are sorafenib and Nexavar helping desmoid patients?

NIH-funded study shows sorafenib improves progression-free survival for patients with rare sarcomas. Interim results from a randomized clinical trial for patients with desmoid tumors or aggressive fibromatosis (DT/DF) show that the drug sorafenib tosylate (Nexavar) extended progression-free survival compared with a placebo.

What are the results of the Nexavar trial?

Interim results from a randomized clinical trial for patients with desmoid tumors or aggressive fibromatosis (DT/DF) show that the drug sorafenib tosylate (Nexavar) extended progression-free survival compared with a placebo. Progression-free survival is the length of time patients lived before their disease worsened.

What are the treatment options for Advanced desmoid tumors?

Systemic treatment options include hormonal blockade, cytotoxic chemotherapy, and tyrosine kinase inhibitors; the response rates associated with these treatments vary (0 to 40%). 12-19 For example, in small prospective studies, imatinib has been found to have limited activity (6 to 11%), and no predictive biomarkers of benefit were found. 20

Which is the most common site of desmoid tumors?

Most desmoid tumors are sporadic (>90%) and harbor CTNBB1 mutations; a minority of tumors are associated with germline APC mutations and Gardner’s syndrome. 2-4 Common primary sites affected by these tumors include the abdominal wall, mesentery, and neurovascular bundle of the extremities.