After being diagnosed with a gastrointestinal stromal tumor (GIST), you’ll likely be meeting with your doctor, specialists, and your entire healthcare team on a regular basis.

All of these people will be very important as you navigate your cancer treatment. It’s key that you and your doctor communicate both honestly and openly. This will help you get everything you need from your healthcare team and understand your diagnosis and treatments.

Ask lots of questions

After a diagnosis of cancer, you’ll have numerous questions. These questions will range from “What is a GIST?” to “What do I do now?”

Feel free to ask as many questions as you’d like about any topic. Asking questions can help you understand your diagnosis and know what to expect throughout your treatment.

Everyone will have different questions about their diagnosis and treatment, but here are some general questions to help you get started:

  • What is my diagnosis?
  • What stage is the GIST?
  • Where is the tumor located?
  • Should I have genetic or molecular testing?

These questions will help you learn about your treatment options:

  • Which treatments do you recommend? Are there other treatments available?
  • What are the benefits and risks to the treatment?
  • How long will the treatment last?
  • When should I start treatment?
  • What should I expect to feel during the treatment?
  • Are there side effects to the treatment? Is there anything to treat these side effects?
  • How will the treatment affect my life?
  • Will I be able to have children after treatment?
  • When should I start treatment? Can I delay it if I have an important event coming up?
  • How do you plan to check for recurrence?

You should also consider asking for contact information:

  • Who is the best person on my healthcare team to contact when I have a question?
  • Who should I contact in an emergency?
  • What is the best time to reach the doctor?

Know how much you want to know

Knowing how much you want to know about your cancer diagnosis is the first step to communicating openly with your doctor. Be honest with your doctor about how little or how much you want to know.

Some people may be overwhelmed when they hear all of the information up front. They may only want to know the basics about their diagnosis and upcoming treatment.

Others may want to know every detail possible about their diagnosis. This can help people feel more in control of their situation and allow them better plan for the future.

Having an idea of how much you want to know will make sure you get the information you want without becoming overwhelmed.

Remember what your doctor says

Your doctor may discuss many complicated and difficult things with you during your appointments. If they use words you don’t understand, ask them to explain those terms. It’s normal to not understand everything that your doctor tells you.

If you find yourself having trouble remembering things you and your doctor talked about, take notes on your conversation. You can also ask if you can record your discussions on a voice recorder or cellphone. This gives you something to review to help you remember your conversation.

Consider also bringing someone like a family member or a friend to the appointment to serve as a second set of ears to help you remember what was said. In addition, having a support person at appointments can help you feel more comfortable during your doctor visits.

The takeaway

Open communication with your doctor will be very useful throughout your journey. Your doctor should have your best interest at heart, and you should ask them any questions that come to mind.