ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team, to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your medical care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

• Where is the desmoid tumor located?

• How large or aggressive is the tumor? Is it affecting vital organs, tissues, or structures?

• Has my diagnosis been reviewed by a pathologist who is experienced in the diagnosis of desmoid tumors?

• Can you explain my pathology report (laboratory test results) to me?

• What does my diagnosis mean?

• Can you recommend a desmoid tumor specialist?

• Was my case discussed in a tumor board or other multidisciplinary conference? What does this mean?

• Do I need to be screened for familial adenomatous polyposis (FAP)?

Questions to ask about choosing a treatment and managing side effects

• Does my desmoid tumor need to be treated right now?

• What are my treatment options?

• What types of research are being done for desmoid tumors in clinical trials? Do clinical trials offer additional treatment options for me?

• How will my desmoid tumor be monitored?

• What treatment plan do you recommend? Why?

• What is the goal of each treatment? Is it to eliminate the tumor, help me feel better, or both?

• What are the possible side effects of this treatment, both in the short term and the long term?

• Who will be part of my health care team, and what does each member do?

• Who will be leading my overall treatment?

• How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

• Could this treatment affect my sex life? If so, how and for how long?

• Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?

• If I am worried about managing the costs of medical care, who can help me?

• What support services are available to me? To my family?

• If I have questions or problems, who should I call?

Questions to ask about active surveillance

• Should I consider observation/watchful waiting instead of active treatment for this tumor? If so, why?

• What might happen if I choose not to start treatment now?

• How will the desmoid tumor be monitored for possible growth or changes?

• How often will I have to be seen by a doctor?

• What tumor changes will mean I should begin active treatment?

• Should I have a second magnetic resonance imaging (MRI) or computed tomography (CT) scan to know if the desmoid tumor will shrink?

Questions to ask about having surgery

• Should I have a biopsy before surgery?

• Is the goal of the surgery to remove all of the tumor? Why or why not?

• What is the likelihood that the tumor will recur after surgery?

• What will happen during this surgery?

• How long will the operation take?

• How long will I be in the hospital?

• How much experience does this surgeon have with desmoid tumors? How many desmoid tumor operations has this surgeon done in the past year?

• What are the possible side effects of my surgery, both in the short term and long term?

• Who should I contact about any side effects I experience? And how soon?

• Do I need any other type of treatment before the surgery? After the surgery?

• Will I need rehabilitation services after the surgery?

Questions to ask about having radiation therapy

• What is the goal of radiation therapy?

• What type of radiation therapy is recommended?

• How experienced is the radiation oncologist with desmoid tumor? How many people with desmoid tumor has this doctor treated in the past year?

• How many treatments will I need, and how long will each one take?

• What side effects can I expect during treatment?

• Who should I contact about any side effects I experience? And how soon?

• What are the possible long-term or late effects of having this treatment?

• What can be done to prevent or to treat side effects?

Questions to ask about having therapies using medication

• What type of medication is recommended?

• What is the goal of each medication?

• How will it be delivered? Through an IV or a pill?

• Will I receive this treatment at a hospital or clinic? Or will I take it at home?

• If given by IV, how many treatments will I need? How long will each take?

• How experienced is the medical oncologist with desmoid tumors? How many people with desmoid tumor has this doctor treated in the past year?

• Should I consider a clinical trial?

• What side effects can I expect from each medication?

• Who should I contact about any side effects I experience? And how soon?

• What are the possible long-term or late effects of having this type of treatment?

• What can be done to prevent or relieve side effects?

Questions to ask about planning follow-up care

• What is the chance that the desmoid tumor will come back? Should I watch for specific signs or symptoms?

• What long-term side effects or late effects are possible based on the treatment I received?

• What follow-up tests will I need, and how often will those tests be needed?

• How do I get a treatment summary and survivorship care plan to keep in my personal records?

• When should I return to my primary care doctor for regular medical care?

• Who will be leading my follow-up care?

• What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.