Being diagnosed with a desmoid tumor can feel overwhelming. You may hear the word “tumor” and think it needs to be removed right away. But desmoid tumors are different. Treatment isn’t always urgent. After diagnosis, you and your care team should talk through the next steps together. This is called shared decision-making.

We interviewed Dr. Seth M. Pollack, the director of the Sarcoma Program at Northwestern University Feinberg School of Medicine. Dr. Pollack shared advice for people with desmoid tumor exploring treatment options with their healthcare teams.

This article will walk you through what shared decision-making is, why it matters, and how you can work with your care team to choose the best option for you.

What Is Shared Decision-Making?

Shared decision-making is a process where you and your doctor work together to decide on treatment. Instead of the doctor simply telling you what to do, you:

• Learn about all your options.
• Understand the risks and benefits.
• Discuss your personal goals and concerns.
• Make a decision as a team.

For desmoid tumors, this approach is especially important. That’s because treatment decisions are not always clear-cut. Unlike many cancers, desmoid tumors often grow slowly. Some may not grow at all. Some may even shrink on their own. Others can cause pain or problems depending on their location.

Because of this wide range of experiences, there is no one-size-fits-all answer.

Do You Really Need Treatment Right Now?

One of the most important questions Dr. Pollack hopes people with desmoid tumors will ask is “Do I really need treatment?”

For many people, the answer may be no, at least not right away.

“Tumors that are asymptomatic or even causing mild symptoms … tumors that aren’t growing, tumors that are shrinking” don’t always need to be treated right away, Dr. Pollack explained. In these cases, active surveillance can be a good treatment strategy.

What Is Active Surveillance?

Active surveillance means closely monitoring your tumor with regular scans instead of starting treatment immediately.

“Active surveillance can actually be the primary treatment for patients with desmoid tumors,” Dr. Pollack said. You may be a good candidate for active surveillance if:

• Your tumor isn’t causing symptoms.
• Your tumor is causing only mild symptoms.
• Your tumor isn’t growing.
• Your tumor is shrinking.

“We do scans regularly,” said Dr. Pollack about people in active surveillance. Scans may happen every few months at first. If the tumor stays stable, appointments can be spaced out over time.

Why ‘First, Do No Harm’ Matters

In the past, many desmoid tumors were treated aggressively with surgery. Today, specialists are more cautious when recommending how to balance treatment with overall well-being and quality of life.

Dr. Pollack emphasized a key principle: “First, do no harm.”

Some people with desmoid tumors have had multiple surgeries in the past. This can lead to:

• Recurrence (the tumor coming back)
• More difficult recurrences
• Long recoveries
• Lasting complications

Desmoid tumors involve cells related to scar tissue. Because of this, some researchers have speculated that surgery itself may encourage more growth. While surgery is still appropriate in certain cases, it’s no longer considered the automatic first choice.

If surgery is recommended, Dr. Pollack strongly advises getting a second opinion, especially if it’s not an emergency.

Questions To Ask If Your Doctor Recommends Surgery

If a healthcare provider recommends surgical removal of your desmoid tumor, Dr. Pollack said, “You should probably get a second opinion.” Consider asking the following questions:

• Is surgery truly necessary right now?
• What’s the risk of recurrence?
• What will recovery look like?
• What are the long-term effects?
• What nonsurgical options am I a candidate for?

Dr. Pollack noted that if a tumor has already recurred after surgery, repeat surgery often carries a very high chance of another recurrence.

This doesn’t mean surgery is never appropriate. In certain cases, it may be a good choice, but it should be carefully considered.

Understanding Medical Therapy

Medical therapy (drug treatment) is now a common option for desmoid tumors.

Newer drugs can shrink tumors or control their growth. Older systemic therapy options are also still used. According to Dr. Pollack, we now have treatments that truly work.

However, medical therapy comes with trade-offs:

• Side effects often appear before benefits.
• Treatment may need to continue for a year or longer.
• There are no clear rules about how long someone should stay on therapy.

If side effects are difficult, doctors may adjust or stop treatment earlier, with close monitoring.

These decisions are not automatic. You and your doctor will need to talk through them carefully. When starting a new drug treatment, ask your doctor:

• What side effects should I expect?
• How soon might I notice improvement?
• How long would I likely stay on this medication?
• What happens if we stop the drug?

Understanding both the benefits and risks of medical therapy can help you make an informed decision.

Considering Local Treatments Like Cryoablation

For some people, a procedure called cryoablation may be an option. Dr. Pollack said, “If I think that medical therapy isn’t a good option for a patient, the first thing I’m doing is recommending cryoablation if that’s possible.”

Cryoablation involves inserting a needle into the tumor and freezing it to destroy tumor cells. It’s less invasive than traditional surgery.

Like any treatment, it can still have a risk of recurrence. However, it avoids the longer recovery time of surgery. Shared decision-making means looking at options like medicine, surgery, local treatments, and active surveillance based on your symptoms.

When Symptoms Change

Treatment plans change with time, which is why it’s important to regularly follow up with your healthcare team at recommended intervals. If you develop new symptoms, be sure to contact your care team.

Dr. Pollack explained that, sometimes, people feel better with treatment even before imaging shows significant shrinkage of the tumor. Other times, pain may occur even if scans don’t show obvious tumor growth. Small changes, especially near nerves, can cause significant discomfort.

Open communication matters. Shared decision-making doesn’t stop after you choose an initial care plan: it continues over time.

The Role of a Second Opinion

“Desmoid tumors are rare,” Dr. Pollack noted. This means that not every oncologist has extensive experience treating them.

If you feel unsure, especially about surgery, getting a second opinion is reasonable and often helpful. A second opinion can:

• Confirm the diagnosis
• Offer alternative treatment options
• Provide reassurance
• Help you feel more confident in your choice

Shared decision-making works best when you feel informed and comfortable.

Your Values Matter

One important point Dr. Pollack raised is that everyone has different comfort levels. Some people prefer to avoid treatment unless absolutely necessary. They may tolerate mild pain if it means avoiding medication side effects. Others feel anxious knowing the tumor is there and want to take action, even if symptoms are minimal. Both approaches are valid.

“I’m usually OK with whatever the patient decides,” said Dr. Pollack, “if they’ve really thought it through and they’ve heard all the information.”

With desmoid tumor, your personal preferences often play an important role. If your doctor clearly explains your options and you understand the pros and cons of each, your choice can guide the decision.

Preparing for Your Next Appointment

Here are some practical steps to help you take an active role in treatment decisions at your next visit:

• Write down your questions before appointments.
• Ask about risks, benefits, and alternatives.
• Clarify what happens if you wait to treat.
• Discuss how treatment might affect your daily life.
• Bring a trusted person with you to your appointment.
• Request a second opinion if you’re unsure.

Remember, you and your medical team are partners in your care. When you understand your options and feel heard by your care team, you’re practicing shared decision-making. This can lead to better outcomes and greater peace of mind.

Join the Conversation

On MyDesmoidTumorTeam, people share their experiences with desmoid tumors, get advice, and find support from others who understand.

What desmoid tumor treatment have you discussed with your doctor? Let others know in a comment below.