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

 
 

To Make Things Easier at the Doctor’s Office
Write down your questions ahead of time. ‘It’s easy to get stressed or flustered in the doctor’s office. Carry your questions for reference, then tick them off,” says Freya Schnabel, MD, director of breast surgery at New York University Langone Medical Center.

Collect your test results. "It’s your right to have your own copies of tests," says Susan Davis, chair, public policy, for the Metastatic Breast Cancer Network. "Collect results as you get them, so if you decide to get a second opinion, you won’t have to wait for the office to give you your chart." Keep everything together in a binder in chronological order, with the most recent reports on top. "You may need to request copies in writing and pay a duplication fee," adds Maureen Smith, director of consumer relations for the Office of the Healthcare Advocate in Connecticut. Expect to wait about two weeks. "If you need to see a specialist sooner, ask the office staff for priority," Smith says. If an office does not comply within 30 days, put the law on your side: File a complaint.
Get another eye to look at your slides. "Always get a second opinion from another doctor about a diagnosis," says Fran Visco, president of the National Breast Cancer Coalition. "Different ones may see different things." Doctors base their treatment on the pathology report, so it’s better to verify a diagnosis sooner rather than later. Major cancer centers may actually require a review,” says Schnabel.
Call the oncology or surgery department at another hospital to see whether they have a person to review your slides. Or contact the American Cancer Society (ACS). Once you’ve located someone, fax the department listed on the original report a written request to forward your slides.

Expand your HMO network. It can take eight weeks for an HMO to authorize a second opinion outside your network. "Don’t wait. Push them for a referral, and start calling local out-of-network cancer centers right away," says Colleen Shaffer, founder and executive director  of Circle of Hope Inc., in Santa Clarita Valley, California.

"HMOs are notorious for using only the minimum number of standard tests," Shaffer says, "so it’s especially important to question what has been done." ACS can provide you with a list of local specialists.

Learn how your doctor’s office works. "Early on, establish a relationship with your doctor’s office manager, who can tell you whether the doctor has telephone hours and what to do if you have an emergency," says Patricia Spicer, breast cancer program coordinator at CancerCare in New York. See whether the oncology nurse can talk to you if the doctor isn’t available. Find support services for people affected by cancer from CancerCare

Leave precise messages. If you’re calling the doctor’s office to ask about results, tell the office exactly what test you need results on, when it was done, and how your doctor can reach you. Tell them if results can be faxed or left on your answering machine. "Be precise and you’ll get information faster and avoid a time-consuming game of phone tag," says Marisa Weiss, MD, president and founder of breastcancer.org. "If you’re calling about a prescription refill, tell them the medication you want, including the dosage, and the name and number of the pharmacy."
To Make Things Easier on Your Body and Mind

Hit the phones. A million questions pop into your head after you’re diagnosed, so talk to a survivor as soon as possible. They can answer questions that take a lot of time to look up. The American Cancer Society’s  Reach to Recovery program pairs newly diagnosed women with others their own age at a similar cancer stage.

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