Records for Life

At a recent gathering of cancer survivors, discussion focused on one woman whose cancer had recurred. She was questioning whether she would be able to have more of the drug that she had taken when she was diagnosed because she knew she was close to her “lifetime limit.”

“So as we begin to learn more about potential long-term side effects, it may help us understand who is more at risk than others.”

Diane Phillips, MD, a doctor of internal medicine in Dallas and a survivor of endocervical adenocarcinoma, says reports are also important because you never know when new findings will make old information relevant to you or your family.

“You may want to go back and look at your case — or for your children. You may have had a cancer that you didn’t think was hereditary and then [scientists] come up with new information.”

Phillips says her cancer, diagnosed when she was 41, was so rare that no one at the University of Texas M.D. Anderson Cancer Center in Houston had seen a case that was not invasive at diagnosis. She underwent a radical hysterectomy. She says that if at some point experts determine her cancer was genetic, it would be important for her children to know biological details about the tumor, which are found in the pathology report.

Many geneticists recommend that families gather as much health information on their members as possible, including medical records of parents and grandparents, if available, to build a solid picture of family health dynamics. The information may be harder to obtain for older generations, whose records may have been kept only by a family physician and not a specialist. (For more about what information is important and why, go to www.genetichealth.com and click on “Getting Medical Records.”)

This information can then have a number of applications, from better prevention in cases where there is a family indication of a disease, such as diabetes or high blood pressure, to better screening for those who have a history of cancer.

“You may want to go back and look at your case — or for your children. You may have had a cancer that you didn’t think was hereditary and then they come up with new information.”

While medical records belong to the physicians, the Health Insurance Portability and Accountability Act (HIPAA) of 1996 says patients are entitled to see and obtain copies of their medical records. Doctors and other health professionals can charge for copying and sending but should provide these records within 30 days. Patients can request a copy in most cases by sending a letter that includes relevant information about when they were treated and by whom. The facility might charge for the copies and if it does, you might want to ask for specific documents, rather than request all documents, due to cost.

Other issues in obtaining records may include time, distance or natural disasters. Medical facilities have to keep medical records only for a specific period set by the state. Because a national push to mandate electronic record keeping that would allow physician access from one source has yet to be enacted, many patients — such as those who fled New Orleans after Hurricane Katrina — have found that their paper records can be very vulnerable.

The days when a primary care doctor takes care of every­thing have changed, Phillips says, with specialists and patients having access to lots more information. “People change doctors, and it’s important for the patient to be their own quarterback and advocate. And that means having all the information they need.”

This information and a significant number of other facts can be found in the medical records that detail treatment and are kept, ideally, by both our family practitioner and our cancer doctors.

Today, with more cancer survivors living longer, having copies of these records has become increasingly important, not only because we need the information should we have a recurrence or a second primary cancer, but also for our children and their children, who may need a detail of what today is considered unimportant but will in the ensuing 50 years become critical in deciding treatment.

Jody Pelusi, PhD, FNP, AOCN, an oncology nurse practitioner in Arizona, helps her patients create a binder with pertinent information arranged in any way that works for them. The critical pieces, she says, include the treatment plan, which has all the drug names, timing, dosing, frequency and number of treatments. This information should also be kept for radiation treatment. Pelusi says that it’s important to have an exit interview with a member of the oncology team to go over the treatment that has just ended and what it means for the future (See “Prescription for Living”).

“It is really a transition time, and it must be fostered gently,” she says, adding that with treatment evolving and dosing changing, it is imperative that patients have this specific information. “So as we begin to learn more about potential long-term side effects, it may help us understand who is more at risk than others.”

Pelusi also recommends surgery reports that say what was done, and she considers the initial consult with the oncologist a key record because it describes the stage of the disease, the patient’s medical history, family history, and any exposures reported to the doctor by the patient.

Patients should include their own diary and notes about how they felt during treatment, Pelusi says, because each record holds information that is important for different reasons, with the medical reports important for the long-term treatment of the patient and the diary helpful in regard to quality-of-life issues.

Other records the patient should keep include the tumor pathology report, any lab work, and copies of imaging studies on disc or on paper.