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.
View artwork created by cancer
survivors »
Find out about survivorship challenges
and late effects »
Get five great tips
for cancer survivors »
Source: SURVIVOR ALERT coordinating team at
the University of Kentucky
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