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Treating desmoid tumors can be tricky, and the guidelines for the best ways to treat them have changed a lot lately. The National Comprehensive Cancer Network (NCCN) no longer recommends surgery as the first treatment option. Instead, your doctor might start with active surveillance — also known as a “watch-and-wait approach.” If they decide it’s time to move forward with treatment, you have options.
One of the treatment options for desmoid tumors is chemotherapy. In this article, we’ll discuss when chemotherapy might be used, what kinds of tumors it can help treat, and what to expect during and after treatment.
Desmoid tumors, also known as aggressive fibromatosis, are noncancerous growths that invade the body’s soft tissues. Although these tumors aren’t cancerous, they can still be difficult to manage, especially for people with conditions like familial adenomatous polyposis (FAP), where desmoid tumors are common.
Chemotherapy drugs are powerful medicines. They work by targeting and damaging the DNA of rapidly dividing cells, including cancer and tumor cells. By stopping the tumor cells from growing and multiplying, chemotherapy can help shrink tumors or slow their growth.
In the treatment of desmoid tumors, chemotherapy can be used alone or in combination with other treatments. These options might include targeted therapy, surgery, cryoablation (freezing the tumor), or radiation therapy. It’s important to work closely with your oncologist (cancer specialist) or a desmoid tumor specialist to understand your treatment options and choose the best plan for your health.
Chemotherapy is usually not a first-line treatment or first treatment option for desmoid tumors. Instead, it’s often considered when other treatments may not be ideal or effective. It can also be a good option if the tumor is growing quickly and needs to be treated urgently.
Some desmoid tumors appear in places where surgery or other treatments would be too risky, like near vital organs or blood vessels. For example, operating on intra-abdominal tumors (tumors inside the abdomen) or tumors in the chest wall might be too dangerous.
In these cases, chemotherapy might be recommended as the main treatment option to shrink the tumor. This can make it easier to manage or combine with other treatments.
Desmoid tumors have a tendency to come back after surgery. When this happens, it’s called local recurrence. If your tumor comes back, especially if it happens several times, your doctor might recommend chemotherapy as the next treatment option. This can help manage the tumor without putting you through multiple surgeries.
Sometimes, a desmoid tumor can start growing quickly or cause symptoms like pain or difficulty moving. This can happen with extra-abdominal tumors (tumors in areas other than the abdominal wall), like those in the hands, arms, thighs, or legs. If the tumor gets worse despite other treatments, chemotherapy might be used to slow its growth and relieve symptoms.
Though it’s uncommon, some people may develop more than one desmoid tumor at a time. This is known as multifocal disease. When surgery isn’t possible for multiple tumors, chemotherapy might be used to treat all the tumors at once.
Chemotherapy treatment of desmoid tumors may begin with a standard dose, or, in some cases, a lower dose, which can make the treatment less intense. Here are some of the chemotherapy drugs your doctor might use to treat desmoid tumors.
Methotrexate and vinblastine (or vinorelbine) are sometimes given at low doses to help control the tumor’s growth. These drugs work by stopping the tumor cells from growing and dividing.
For more aggressive tumors, doctors might use doxorubicin and dacarbazine. These drugs are stronger and may be used when the tumor is growing quickly or causing severe symptoms. Doxorubicin damages the DNA in tumor cells, while dacarbazine stops the cells from multiplying. Together, they can act quickly to shrink the tumor or prevent it from growing.
Liposomal doxorubicin is a special form of doxorubicin that’s wrapped in tiny fat particles called liposomes. Liposomes help the drug target the tumor more directly, which can reduce side effects. It’s a common chemotherapy option for desmoid tumors and can help minimize damage to healthy tissues.
Treatment procedures can vary depending on the type of chemotherapy drug you receive. Before starting chemotherapy, it’s important to talk with your oncology or desmoid tumor specialist about your expectations, concerns, and treatment goals. They’ll explain the benefits and potential risks of chemotherapy and what to expect during and after the treatment.
Chemotherapy for desmoid tumors is usually given through an intravenous (IV) line at a hospital clinic. This delivers the medicine directly into your bloodstream, so it can reach the tumor. The IV treatments can take anywhere from 30 minutes to a few hours, depending on the drug.
The length of chemotherapy treatment for desmoid tumors can vary depending on how the tumor responds to the drugs. It might last several months, with cycles of chemotherapy every few weeks. Or you might have more frequent chemotherapy, with weekly treatments for a shorter time.
During chemotherapy, your doctor will keep a close eye on your progress. This might involve regular physical exams, blood tests, and imaging scans to check the size of the tumor. If the tumor isn’t responding as expected, your health care team might adjust your treatment plan.
Treatment of desmoid tumors often requires long-term monitoring. It’s important to stay in touch with your doctor and let them know about any new symptoms or concerns. This helps them make the best decisions for your care.
Chemotherapy drugs affect not only tumor cells but also the healthy cells in your body. As a result, side effects can happen. With a low dose of chemotherapy, you might have fewer and milder side effects than with conventional doses. Some common side effects of chemotherapy drugs can include:
If you’re worried about side effects or how the treatment could impact your quality of life, talk to your health care team. They can provide more resources or recommend support groups to help you through the process.
MyDesmoidTumorTeam is the social network for people with desmoid tumors and their loved ones. On MyDesmoidTumorTeam, members come together to ask questions, give advice, and share their stories with others who understand life with desmoid tumors.
Have you had chemotherapy treatment for a desmoid tumor? What side effects did you experience? Share your story in the comments below, or start a conversation by posting on your Activities page.
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Richard F. Riedel, M.D.
is an associate professor with tenure in the Division of Medical Oncology at Duke University Medical Center.
Learn more about him here.
Zoe Owrutsky, Ph.D.
earned her Bachelor of Science from the University of Pittsburgh in 2014 and her Ph.D. in neuroscience from the University of Colorado Anschutz Medical Campus in 2023.
Learn more about her here.
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