Mastocytosis: Questions to Ask the Doctor

Approved by the Cancer.Net Editorial Board, 05/2015

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

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your 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, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

Questions to ask after getting a diagnosis

  • What type of mastocytosis do I have?

  • Is the mastocytosis cancerous or benign? What does this mean?

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

  • Should my mast cells be tested for the c-kit mutation?

  • Are there any other skin lesions that should be biopsied?

Questions to ask about choosing a treatment and managing side effects

  • How can we manage the symptoms of mastocytosis?

  • Are there any medications or activities I should avoid?

  • What are my treatment options?

  • What clinical trials are open to me? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment?

  • What are the possible side effects of each 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 coordinating 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’m worried about managing the costs related to my medical care, who can help me with these concerns?

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

  • Whom should I call for questions or problems?

  • Is there anything else I should be asking?

Questions to ask about having surgery

  • Do I need to have surgery?

  • What type of surgery do you recommend?

  • How long will the operation take?

  • How long will I be in the hospital?

  • Can you describe what my recovery from surgery will be like? How long will it take for me to heal?

  • What are the possible long-term effects of having this surgery?

Questions to ask about having targeted therapy or chemotherapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How will this treatment be given? Through an IV or orally?

  • How long will I need to continue this treatment?

  • What side effects can I expect during treatment?

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

  • What can be done to relieve these side effects?

Questions to ask about planning follow-up care

  • What is the risk that the mastocytosis will come back? Are there signs and symptoms I should watch for?

  • 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 I need them?

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

  • Who will be coordinating my follow-up care?

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

The next section in this guide is Additional Resources, and it offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu on the side of your screen to choose another section to continue reading this guide.