Skip to content

Finding New Approaches to Treat Desmoid Tumor Patients

In This Article

  • Surgery for aggressive desmoid fibromatosis is only about 50% successful, leaving many patients with functional deficits
  • Patients with desmoid tumors could potentially become less symptomatic over time without any intervention, or at the very least reach a state of being "cured enough"
  • The Orthopaedic Oncology Service is a multidisciplinary clinic in collaboration with the Mass General Cancer Center with specialties including medical oncology, surgery and radiation oncology to deliver the best outcomes for patients with desmoid tumors

Desmoid tumors have long been a vexing problem for surgical oncologists. Although surgical removal of these tumors is common, it is only curative about 50% of the time. New research from Kevin Raskin, MD, acting chief of Orthopaedic Oncology at Massachusetts General Hospital, suggests surgery may not be appropriate for most desmoid tumors and physicians should consider a multidisciplinary approach to managing the disease.

"Successful surgery on someone with a desmoid tumor or aggressive fibromatosis is almost a coin flip," says Dr. Raskin. "It's not a surgical problem. It is a multifactorial problem whereby we have to tailor the best combination of treatments for each patient."

In a recent study, Dr. Raskin found that many desmoid tumor patients regret having surgery. The tumors tend to grow back, and in many cases, surgery leads to secondary concerns including nerve problems, infection, pain and decreased range of motion.

Instead of surgery, a multidisciplinary approach might help patients reach a state of being "cured enough."

Time May Not Be of the Essence When Treating Aggressive Fibromatosis

Dr. Raskin believes time is a crucial element for managing desmoid tumors, but not in the way physicians and patients usually consider it. Patients often feel there is an urgent need to remove a tumor and don't stop to grasp the associated surgical risks. To determine the long-term effects of this sense of urgency, Dr. Raskin's research sought to measure patient-perceived outcomes over time.

"The time element is important because, with a little space, patients can reflect on the care they received," says Dr. Raskin. "Then they can decide if they think the motivation toward surgery in the immediate throes of getting the diagnosis prompted them to have surgery prematurely."

Dr. Raskin hypothesized that patients with desmoid tumors might become less symptomatic over time without intervention as they adapt to their limitations.

The "Cured Enough" Patient

Through the retrospective study, researchers compared patients' medical and surgical treatment histories to their functional outcomes. They combined this data with a patient-reported outcome measure of pain level, function and patients' acceptance of their limitations.

After learning that many patients left with functional deficits regretted having surgery, the team considered whether sometimes patients could be cured enough without surgical intervention.

Dr. Raskin says the cured enough patient is one who can examine all the variables and conclude that they do not need excessive intervention. "Patients realize they may have a tumor and some limitations in the things they do, but they don't want to create bigger problems with surgery. In essence, they are cured enough to lead a satisfactory life."

Multidisciplinary Care is Key to Helping Patients with Desmoid Fibromatosis

To help more patients reach cured enough status, surgery for desmoid tumors may not be indicated. "It sounds odd coming from a surgeon, but I believe desmoid tumor is not always, if ever, a surgical problem," Dr. Raskin says.

Rather, a collaborative approach will help most patients receive more effective treatments than surgery. Physicians need to know the history of a patient's desmoid tumor, the various methods that have been employed to treat it to date, and their commensurate success and failure.

The best results come when a team of experts from different specialties manages desmoid tumors together. When patients with desmoid tumors are referred to the Orthopaedic Oncology Service and the Mass General Cancer Center, they see an orthopaedic surgical oncologist, a medical oncologist and a radiation oncologist on the same day. The multidisciplinary team, which has been treating desmoid tumors in this way since 1972, discusses each patient to determine the best treatment plan in realtime.

This approach requires providers to "never do anything always," says Dr. Raskin. Instead, they must be nimble. "Certainly, some patients can be successfully treated with surgery. But we deliver the best care for difficult desmoid tumors when we tailor treatment with a combination approach."

"Whether it's medications at first to see if we can get the tumor to shrink or surgery in conjunction with radiation therapy, we put our collective minds together to develop the best plan that will get patients to a place of comfort," says Dr. Raskin. "Time may be our best ally in managing desmoid tumors and helping patients be cured enough to live meaningful, high-quality lives."

Learn more about the Orthopaedic Oncology Service

Refer a patient to the Orthopaedic Oncology Service

Related topics


Using CRISPR gene editing, researchers at Massachusetts General Hospital and China have become the first to identify an association between high CD44 expression and drug resistance in osteosarcoma—and to show that CRISPR can significantly suppress CD44.


In this video, Joseph Schwab, MD, discusses the field of cancer immunology, which is guiding a lot of the orthopedic research at Massachusetts General Hospital, and his research on HLA expression on cell surfaces and to discover new immunotherapy targets.