If you or a loved one has been diagnosed with a desmoid tumor, you might be wondering about the different treatment options available. One of these options is radiation therapy. While radiation isn’t always the first choice for treating desmoid tumors, it can be an important part of your care plan in certain situations.

In this article, we’ll discuss five key facts to know about radiation therapy for desmoid tumors. We’ll cover when radiation is used, what to expect during treatment, and possible side effects. Remember, it’s essential to work with a team of specialists who have experience treating desmoid tumors to make sure you’re getting the best care possible.

1. Radiation Therapy May Be a Fit if Other Treatments Aren’t Good Options

Radiation therapy uses high-powered X-rays or other types of energy to target and destroy tumor cells. The goal is to damage the DNA inside these cells, which stops them from growing and dividing. Over time, the damaged tumor cells die, causing the tumor to shrink, stop growing, or disappear entirely.

Radiation therapy (also known as radiotherapy) is often considered when surgery for desmoid tumors isn’t an option or when other treatments haven’t worked. For example, some desmoid tumors are located in areas where surgery would be too risky or could cause serious complications. If the tumor is near vital organs, blood vessels, or nerves, your doctor may suggest radiation therapy instead. In some cases, radiation therapy might be used if other treatments have already been tried without success. Your health care team will help you decide whether radiation therapy is right for you.

2. Tumor Location May Dictate Radiation Therapy Options

Not all tumors are treated with radiation. The best treatment of desmoid tumors depends on several factors, including the tumor’s size, location, and behavior.

Tumor Location

The location of your tumor is important in deciding what treatment option might be best. Radiation can be a good option for tumors in the abdominal wall or extra-abdominal tumors (tumors in other areas), such as those in the head, neck, chest, or spine. This is because tumors in these areas can be difficult to remove through surgery without damaging nearby tissues.

On the other hand, radiotherapy is usually not a great option for intra-abdominal desmoid tumors (tumors that grow into the abdomen), because it can cause inflammation of the intestines.

Local or Aggressive Tumors

You might see desmoid tumors referred to by another name — aggressive fibromatosis (or desmoid-type fibromatosis). Sometimes, they grow slowly and don’t require treatment. But in other cases, they can spread quickly, causing symptoms and invading other healthy tissues.

Tumors That Return After Surgery

Desmoid tumors can come back after other treatments, such as surgery. When a tumor comes back to the same place it was removed from, it’s called local recurrence. If your tumor comes back after surgery (a recurrent tumor), radiation therapy may be used to reduce the chances of it growing again.

Tumors that are small and not causing symptoms may not need radiation therapy or any treatment at all. Instead, your doctor might suggest monitoring the tumor with a watch-and-wait approach, also known as active surveillance. During active surveillance, your doctor will probably use imaging tests, such as magnetic resonance imaging (MRI) or computed tomography (CT) scans, to keep an eye on the tumor over time.

3. Treatment Procedures for Radiation Therapy Can Vary

If radiotherapy is recommended for your desmoid tumor, it’s helpful to know what to expect. Here’s a general overview of the process.

Planning Your Treatment

Before starting radiation, you’ll have a planning session called a simulation. During this session, your radiation oncologist will use imaging scans (usually a CT scan) to determine exactly where the radiation needs to be targeted. This helps make sure the treatment focuses on the tumor while protecting as much healthy tissue as possible.

During the Treatment

Radiation can be given in different ways, but the most common method uses a machine called a linear accelerator. This machine focuses the radiation beams precisely on the tumor to minimize damage to nearby healthy tissues. The treatment is planned carefully to make sure the tumor gets the right dose of radiation while protecting as much healthy tissue as possible.

Radiation therapy is usually given five days a week for several weeks. Each session is fairly quick, lasting about 15 to 30 minutes, including setup. During treatment, you’ll lie on an examination table while a machine directs the radiation beams at the tumor.

Follow-Up and Monitoring After Treatment

Throughout your treatment, your health care team will check on you regularly and adjust your treatment plan if needed. During follow-up visits, they might take additional imaging scans to make sure the desmoid tumor is shrinking as it should. It might take weeks or even months to see results. Your health care team will also keep an eye on any side effects that might come up.

Radiation therapy itself doesn’t hurt, but it’s normal to feel anxious or uncertain about the process. Talking with your health care team about any concerns you have can help ease your worries and make the experience more comfortable.

4. Radiation Treatment May Cause Side Effects

Like any treatment, radiation therapy can cause side effects. These side effects vary depending on where the tumor is located and how much radiation is used. Here are some common side effects you might experience:

• Skin reactions
• Fatigue
• Swelling and pain
• Nausea and vomiting
• Low blood cell counts
• Digestive issues (for abdominal tumors)
• Hair loss (for head and neck tumors)

Sometimes, side effects from radiation can take months or years to develop. These are called late side effects and can happen in any healthy tissue that receives radiation.

It’s also important to note that radiation therapy may increase your risk of developing cancer later in life. There is also a slight chance of getting another tumor in the same area, although this is rare. Because of these risks, radiation is usually not recommended for younger people or those with a family history of cancer.

It’s important to talk with your oncologist (cancer specialist) about possible side effects and how to manage them. Keeping an open line of communication with your health care team will help you stay as comfortable as possible during your treatment.

5. Radiation Therapy Is Sometimes Combined With Other Treatments

Sometimes, radiation therapy is the main treatment used for desmoid tumors, especially when surgery isn’t an option. This approach might be used if surgery is too risky, other treatments haven’t worked, or the tumor doesn’t require surgery.

In other cases, radiation therapy is used as an adjuvant (add-on) treatment along with other types of therapy. It’s common for radiation to be combined with surgery or used before surgery to shrink the tumor as much as possible before the procedure.

If you’ve already had surgery and your doctor is worried that it could come back, they might suggest radiation therapy afterward. This strategy is sometimes used for people with recurrent tumors. It’s more commonly used for extra-abdominal desmoid tumors than intra-abdominal ones.

Desmoid tumors are rare, and their treatment can be complex. Because medical treatment guidelines have changed in recent years, it’s important to work with a specialist who is up to date on the latest research. If you’re not already seeing a desmoid tumor specialist, consider seeking a second opinion from an expert.

Talk With Others Who Understand

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 radiation to treat your desmoid tumor? Share your experience in the comments below, or start a conversation by posting on your Activities page.