Leiomyosarcoma Medical Records

One of the best tips I received when first diagnosed came from a friend who was also a doctor, “Get copies of all your medical records and keep them organized.”  Not only is it your legal right to all your leiomyosarcoma medical records information, it is your responsibility as a patient. Why?

  • Doctors can overlook details in your reports that you can catch
  • you can ask for corrections when there are mistakes that matter
  • You can supply any missing reports when consulting with a new doctor
  • And most important, so you are completely informed to make your best decisions

Order the Records
Call the medical records department of your cancer center or hospital. Tell them the dates (from your first surgery or diagnosis of LMS to present) that you want records from.  Ask them for all:

  • Surgical reports
  • Path reports
  • Radiology reports
  • Lab reports
  • Doctor visit notes or summaries

They will tell you when you can come in to pick them up, typically in 3-5 days.  Some will mail the reports to you, after you sign a consent form. Most hospitals have a minimal charge of about $10 for the copies. Well worth it!

Organize Your Medical Records
Buy a three ring binder and at least 8 dividers. Pocket dividers are nice to quickly have a place to put new reports before you time to get to a 3 ring hole punch.  I personally prefer the sectioned card board files with the two prongs attached at the top of each section (like the doctors have.) Either way, make sure you also have a hole punch!  Some people also buy a vinyl card holder for every practitioner’s business cards. It’s a great way to have all the phone numbers handy.  Don’t forget some notebook paper for your own notes or questions at your doctor appointments.

Shopping list

  • Binder or cardboard sectioned file
  • Pocket dividers (8)
  • Business card holder
  • Hole puncher
  • 3 ring paper

Make dividers for:

  • Surgical reports
  • Path reports
  • Radiology reports (CT, MRI, PET scans & treatments)
  • Lab reports (blood counts, etc.)
  • Doctor visit notes or summaries
  • Medication list of your current drugs
  • Doctors contact info (or business card holder)
  • Your notes and questions

Staying Organized
File your reports in chronological order, with the most recent on top.    

Highlight with a marker, any important info in the reports.  I highlight the dates of all reports, findings of the path and radiology reports and anything I have questions about. That way I can find the information very quickly without reading the report again.  Ask your doctor to explain anything you don’t understand.  Look up medical terms definitions ahead of time to save time.  You might also ask for help on the LMSDR Facebook group!

Keep your medical records current and bring your notebook with you to all appointments. This is especially important if you are seeing a new doctor, who may not have all your current records themselves.

Scans on CD’s
After each scan, go to the radiology department’s scan department (they all have different names…) and ask for a copy of your scan on a CD. They will load the software app with it.  Keep these and also bring them to any new 2nd opinion consultation appointment in case they don’t have access to your cancer center’s records.  You will eventually have a stack of these, so just bring the last 3 scans to your appointment.

Summary
The more you read, take time to understand and organize your medical records, you will have better questions and discussions with your doctors. You have to be the expert on YOU! This will help you make your best informed decisions, that you will feel confident about.

For more support information see the LMS Boot Camp Videos  
Managing Cancer-Related Paperwork

Sharon Anderson MSW
uLMS stage IV survivor since 2002
President LMSDR