The Cancer Patient's Guide to Navigating the Healthcare System

A breast cancer diagnosis comes with one guarantee: a lot of red tape. We asked insiders for their best advice on simplifying the process.

By Cheryl Platzman Weinstock

Prepare for chemo. Before undergoing chemotherapy, consider consulting a therapist who specializes in cognitive behavioral therapy and guided imagery techniques, says psychiatrist David Fassler, MD, of the University of Vermont College of Medicine. "People who learn to view their chemotherapy as powerful medicine tend to have fewer side effects than people who see it as poison. They miss fewer sessions and finish faster." Ask your oncologist to recommend a therapist.

Ask if your insurance covers complementary medicine or other extras. Acupuncture or massage can help you cope with side effects such as fatigue and nausea. Many insurers offer coverage for home health nurses after surgery. "They can be very reassuring to patients by checking bandages and answering questions," says Deanna Attai, MD, a breast surgeon in Burbank, California.

Do your homework before any tests. "Information is only as powerful as your ability to understand it," says Cindi Cantril, RN, coordinator of cancer support services for the Martin O’Neil Cancer Center in St. Helena, California. Before you get your biopsy results, she suggests, read "Your Pathology Report" on breastcancer.org. You’ll be more likely to know what you’re dealing with and less likely to overreact.

“Today, pathology reports are more complex than ever. In addition to the main reports, you may have those that assess your hormone receptors, the genomics of the tumor, and HER2/neu status. Make sure you collect all of these, as they may be processed over several days,” says Schnabel.

Get representation. "Appoint someone as your captain of kindness," says Paula K. Rauch, MD, a coauthor of Raising an Emotionally Healthy Child When a Parent Is Sick.

This person organizes other people who want to do things for you, like cook or drive, and she can save you time by ensuring that necessary tasks get done when they need to. And your minister of information can give others updates and help deflect uncomfortable questions, which can save you from having to explain things over and over again.

Don’t be afraid to say you’re stressed. "Mental health issues related to breast cancer are very treatable," says Michelle Riba, MD, of the University of Michigan Comprehensive Cancer Center. Since they can interfere with your physical health by making it hard to stick with treatments and live a healthy lifestyle, it makes sense to speak up. Depression or anxiety may be a side effect of your treatment or may be a symptom of cancer itself, she adds.

To Make Things Easier at the Hospital
See a discharge planner as soon as you check in. If you’re going to the hospital for a mastectomy, ask to see a discharge planner or social worker, Spicer advises. Figuring out what home medical care you’ll need in advance, as well as any specific instructions, will save you time and stress.

Choose a healthcare proxy. "Designate in writing someone to make healthcare decisions for you before you check in to the hospital," says Beverley Johnson, president and CEO of the Institute for Family-Centered Care in Bethesda, Maryland. A simple document can establish who can make medical decisions for you if you can’t. Having the document ready can save you time during hospital registration, and if there is a problem during your stay and a decision needs to be made quickly, no time will be lost establishing a proxy. Find healthcare proxy forms valid in your state.

Before surgery, ask about your recovery. "During your preoperative discussion, ask questions like ‘How long will it take until I’m able to take care of myself?’" says Schnabel. "If you’re going for breast conservation surgery, ask what will happen if the margins aren’t clear. This will help you deal with the surgery results and anticipate the next steps."

“Also ask your doctor when the results of your surgery will be ready and how quickly you can get pathology results. With a plan in place, you can ease the anguish of what feels like an endless and suspenseful wait,” advises Weiss.

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