Nearly half of all cancer patients and others in their households have trouble coordinating cancer care, according to a recent public health poll.Many who participated in a recent telephone poll revealed they were confused about prescriptions, were sent for duplicate tests, and received conflicting information about their treatment plans.
Experts say choreographing care is one of the most important challenges in the world of cancer. Navigating the maze of medical madness can be emotionally draining and can even hurt a patient's chance of recovery.
Now is the time to become advocates for our own health -- before we are left behind. So get ready to take charge -- and consider these seven thoughts on actively coordinating your own cancer care.
- Today, cancer patients spend more time at home and not in hospitals like they did generations ago. This leaves them to manage much of their care on their own -- often a monumental and overwhelming task. Patients, or a designated friend of family member, should document every tidbit of medical information, including names, phone numbers, medical records, instructions, medications, dosages, appointments, questions, responses, and more. Jot down symptoms and worries and concerns. File away pamphlets and handouts and bills and receipts. Don't count on memory alone to provide all the details. Allow for back-ups. They will serve you well.
- Most cancer patients need a whole team of doctors -- radiologists, pathologists, medical oncologists, radiation oncologists, surgeons -- but each doctor may handle only one aspect of care while no one runs the show. It's the perfect scenario for disrupted and piecemeal care, says one doctor. Consider searching for comprehensive cancer centers where a variety of professionals are housed under one roof and patients can often meet with all their doctors at one time. Currently, only about 10 percent of cancer patients are seen at this type of large center.
- Many doctors are stuck in electronic gridlock because doctors in one building may be unable to access the records of doctors in other locations due to incompatible computer systems or paper charts. Patient advocates say all patients should have easily accessible electronic medical records. One cancer center hopes to start a program that would allow for storage of patient records on small, portable USB flash drives. Patients would keep the drives and could plug them in at home or at their doctor's office.
- Cancer patients often suffer from lack of information. Long-term survivors, for example, often have trouble recalling exactly what was done to them. And over time, doctors may relocate or pass away, leaving survivors with little to reconstruct their journeys.
- Shortly after diagnosis, patients should request from their doctors a care plan -- an outline of how doctors plan to treat their cancers.
- Patients should also receive a treatment summary at the end of therapy. This should outline all surgeries, chemotherapy, radiation, medications, and dosages.
- A plan for ongoing care should be offered to all cancer patients so they know how to monitor their health. This plan should include guidance on screening tests, follow-up visits, and potential long-term side effects.


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