VALERIE

Valerie, 25, expected that getting her medical records from her treatment for childhood liver cancer would take about two weeks. Instead, it took nine months. She persevered because she realizes that her cancer treatment 16 years ago can affect her health today.

“Over the years, a doctor would ask occasionally what cancer medications I was given as a child,” said Valerie, who lives in Alabaster, Ala. “I didn’t have a clue. I was 9 years old when I was diagnosed. Children do not ask questions.”

Valerie began asking questions two and a half years ago, after she visited her doctor about heart palpitations. The doctor suspected it was a late effect from her cancer treatment, but couldn’t find anything wrong.

“After that, I definitely wanted any doctor treating me to know exactly what cancer medications I had,” she said. “I contacted the institution where I was treated, but they said I couldn’t see my own records without a physician being present to go over them with me."

There were many delays and phone calls. Finally, after nine months, Valerie received a three-page summary of all her medications, dosages, possible late effects, and follow-up guidelines.

It was worth the wait, she said.
"Now, I take my cancer records to doctor appointments whenever I think the doctor might ask about them. It makes me feel better to have this information handy if anyone needs it."

Having all her medical records makes Valerie feel more empowered about her health. "I think a lot of young adult survivors underestimate the importance of having their records," she said.

Get Your 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 create the best approach for your care.

Where do I start?
Call the medical records department at the hospital or clinic 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. Following up with the same person can save you hassles.

If your facility does not have its own medical records form, download a Cancer Survivors Medical Treatment Summary (PDF) from the Lance Armstrong Foundation or the Cancer Patient’s Treatment Record(PDF) from Patient-Centered Guides. Ask a doctor or nurse at your treatment facility to help you complete them.

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 site and click on "State Law."

What information should I get?
Ideally, get as many of the following facts as possible. Even some information may 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 my records?
Most medical institutions send you one copy of your records at no cost, but charge $1 per page for additional copies. Generally, there is no charge when a health care facility requests a patient’s records.

Who can help me if I run into obstacles?
Cancer information specialists from the following organizations can help you:

	National Cancer Institute's Cancer Information Service 1-800-4-CANCER
	CureSearch, 1-800-458-6223 (check this #)
	American Cancer Society, 1-800-ACS-2345
	CancerCare,1-800-813-HOPE
	Leukemia & Lymphoma Society, 1-800-955-4572
	Lance Armstrong Foundation, 1-866-235-7205

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. For information on obtaining treatment summary forms online, see Pass Your Records On.

Back to 5 Things To Do