Take Charge of Your Care


Tips from the National Leiomyosarcoma Foundation for making the most of your appointments and care.

If you have questions or concerns prepare for your appointments because many times time is short or things may be rushed during your oncology or care team appointment. Be organized, be prepared before your appointment to get the most out of your appointment.

Speak up! Don’t be afraid to ask a question or pose a concern. You have the right to ask and get a response from your care team. On www.nlmsf.org your “Patient Compass” you will see what questions to ask when, and who to direct a particular question to on your care team. This guidance should be helpful to you.

Take someone with you to your appointments, if you can, to help be an extra pair of eyes and ears, and take notes for you as you receive answers to your questions, and as other information is given to you that you will want and need to remember. If you don’t understand a medical term, ask what it means to get immediate clarification. After you get instructions or an explanation repeat back what you thought you heard so you can reconfirm your understanding of the information.

Make sure that any key facts our doctor tells you are written down so you won’t forget. Have an organized notebook, with pocket folders, to house your lab tests, CT scan reports, questions you want to ask, notes taken during appointments. If you would like such a notebook already assembled for you email: annieachee@aol.com or call me 303-783-0924. You can see what the notebook looks like on the website under the merchandise page.

Additionally, a word to the wise: If you are in the hospital make sure that the nurses and doctors are checking your ID bracelet to make sure you are getting the correct medications and medical assessment.

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