It’s understandable if you get flustered when seeing your desmoid tumor specialist and don’t know what type of questions to ask. Before your next appointment, you can prepare questions to help you better understand what kind of care is best for your particular condition. Write them in a notebook so you will not forget about them during the consultation.

To learn more about questions you should ask your doctor, MyDesmoidTumorTeam spoke with Dr. Seth M. Pollack, the Steven D. Rosen Professor of Cancer Biology at Northwestern University Feinberg School of Medicine. Dr. Pollack is the director of the schoo’s sarcoma program and was formerly an advisor for the Desmoid Tumor Research Foundation.

As a medical oncologist and sarcoma specialist who treats soft tissue tumors like desmoid tumor (DT), Dr. Pollack is keen on helping people make informed decisions about their care. “I’m usually OK with whatever the patient decides, if they’ve really thought it through and they’ve heard all the information,” he said.

“Never hesitate to ask questions,” a MyDesmoidTumorTeam member said. “My college professor always told us the only stupid question is the one you never ask.”

Here are questions Dr. Pollack believes are crucial for people living with desmoid tumor.

1. Do I Really Need Treatment?

Guidelines for the treatment of DT recommend observing a tumor before treatment and monitoring it with imaging tests such as MRI or CT scans. This approach is known as active surveillance.

Dr. Pollack explained that fast-growing tumors or painful tumors that impact quality of life may need treatment right away, but in many cases, active surveillance is enough.

“For patients whose tumors are asymptomatic or even causing mild symptoms, who may have tumors that aren’t growing or are shrinking, you don’t need to treat these patients right away,” Dr. Pollack said.

2. What Are the Potential Advantages of Medical Therapy?

Medical treatment options for desmoid tumor have improved considerably in recent years, including newer targeted therapies approved by the U.S. Food and Drug Administration (FDA).

“We have good drugs now that really work,” said Dr. Pollack. He went on to say that other drugs are in clinical trials. “There’s probably another drug that’s going to be FDA approved. There’s another one that’s in development. So there’s actually a lot of options now for desmoid tumor patients.”

3. What Are Possible Drawbacks of Medical Therapy?

Any drug can cause adverse reactions, and it’s important to ask your doctor about potential side effects if you’re planning to try a new treatment for desmoid tumor. There are other disadvantages to consider as well, Dr. Pollack said.

It’s also good to ask how long you may need to take medication. “[The drugs] don’t work overnight either. So you probably need to go on the drug usually a year,” he explained. “Sometimes people are on it for a few years before they kind of feel comfortable coming off of it.”

Another drawback of medical therapy is that it is not guaranteed to work in all people. Most will have a good response, but there are those who do not respond or will respond only temporarily.

4. Should I Consider Another Type of Therapy, Such as Cryoablation?

Cryoablation is a relatively new desmoid tumor treatment. It involves using a probe to deliver extremely cold temperatures to freeze and destroy tumor tissue. It’s been shown to be effective in more than 75 percent of cases, without the side effects associated with medication.

“If I think that medical therapy isn't a good option for a patient, the first thing I’m doing is recommending cryoablation,” said Dr. Pollack.

However, Dr. Pollack pointed out that a tumor may still come back after cryoablation. “There’s still a high rate of failure for this treatment, but at least you don’t have to go through the surgery.”

5. Is This Recommended Surgery Really Necessary?

Surgery used to be common for desmoid tumor. However, researchers and physicians now understand that surgery can cause problems such as a high rate of tumor recurrence and a risk of damage to tissue around the tumor.

“These days, I’m recommending surgery for very few desmoid tumor patients,” Dr. Pollack said.

Surgery may be the best option for your desmoid tumor, depending on where the tumor is and the tumor size. But Dr. Pollack thinks surgery should be questioned, especially if you’ve already had surgery and your tumor comes back.

“If somebody is telling you that you need to have surgery for a desmoid tumor, you need to really push back on it and get different opinions,” he stressed.

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