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Gain Access to your Cancer Treatment Records

Many of the 250,000 survivors of childhood cancer in North America do not know the specifics of their treatment and/or their health risks. Acting as your own advocate by taking control of your cancer treatment records and follow-up care is an important part of long-term survival. Here are answers to some questions you may have:

Why are my cancer treatment records important now?

The first thing you must share with any health care provider is your medical history. Having access to your treatment records helps your doctors know what to watch for and how to create the best approach for your care.

Where do I start?

First, call the medical records department at the institution(s) where you were treated and request a Release of Medical Records form. On the form, specify the records you want sent to you, sign the form and fax or mail it back. Write down the name of the person to whom you spoke. Getting medical records can be difficult, and following up with the same person can save you hassle.

Am I entitled to see my records?

Not all states have laws that give people the right to see their own medical records. To learn about the law in your state, go to the Health Privacy Project Web site at www.healthprivacy.org and click on State Law.

What information should I get?

Ideally, get as much information as possible. Even some of the following facts can be helpful in the future.

  • Your diagnosis (type, stage, location of cancer, date)
  • All surgeries (types, facility, dates) and pathology reports
  • All chemotherapy drugs (doses, facility, dates)
  • All radiation therapy (sites, doses, facility, dates)
  • Key lab, pathology and x-ray reports
  • Type and date of bone marrow or stem cell transplant, if you had one, as well as any procedures you had in preparation
  • Clinical trial protocol name and number, if you were in a trial
  • Contact information for your key providers
  • Dates of relapses, if any
  • Any complications resulting from your cancer or its treatment
  • Recommended medical follow-up

Will I be charged for these records?

Most medical institutions will send you one copy of your records at no charge, but will charge one dollar per page for additional copies. Generally, there is no charge when a health care facility requests a patient’s records.

What do I do with my records after I get them?

Use the information to complete a cancer treatment summary form, which you should share with all your health care providers. You can download a form from the Lance Armstrong Foundation Web site at www.livestrong.org. Click on Take Control, Tools & Materials, Survivorship Tools, and Cancer Survivor’s Medical Treatment Summary. You also can access a form at the Patient-Centers Guides site at www.patientcenters/com/survivors. Click on Cancer Patient’s Treatment Record. As you receive follow-up care, update your summaries as needed.

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Source: SURVIVOR ALERT coordinating team at the University of Kentucky