How to treat and diagnose desmoids tumors?

 Although very rare, failure to diagnose and treat desmoids tumors, also called aggressive fibromatosis, a tumor that develops in the fibrous tissue that forms tendons and ligaments, can be medical malpractice. Desmoids tumors are very rare and difficult to diagnose and doctors are still debating what is the most appropriate categorization and treatment. In a recent article in the Washington Post, Sandra G. Boodman writes about a 24 year woman who suffered several episodes of excruciating stomach pain before being diagnosed and treated for a desmoid tumor.

Johanna Dickson was 23 years old when the first symptoms of the disease occured. She had just come back from South Africa when she suffered a first episode of acute abdominal pain. She thought she caught some type of stomach bug in her last trip. The family doctor sent her to the hospital for various tests but nothing was found and the pain disappeared.

Another crisis happened six months later but it went away quickly so she didn’t even bother to see a doctor.

A year later, the third crisis was so intense that she checked in at the ER of a New Jersey hospital.  The results of her CT scan indicated that she had a serious bowel obstruction and that surgery would be necessary. The surgeon told her that her intestine was badly tangled and that this condition was very unusual for someone of her age. During the procedure the surgeon said he would untwist the intestine and relieve the obstruction.

While doing the surgery, the surgeon found a tumor in Dickson’s intestine. The tumor had a strange shape and the surgeon was perplexed. He wasn’t sure if the tumor was benign or malignant. He removed about 10 inches of her intestines in case it was an invasive cancer. He then sent the tumor to the Mayo Clinic pathologists who classified it as a desmoids tumor. Scientists are still debating if this type of tumor should be classified as a cancer or not. Recurrence can happen and after the surgery Johanna Dickson was screened regularly. 5 years she later had to undergo another surgery to relieve pain caused by the scare tissue from the previous operation but so far the tumor has not returned. See U.S National Library of Medicine for more information.

Picture: desmoid tumor courtesy of Wikipedia