A breast cancer diagnosis comes with one guarantee: a lot of red tape. We asked insiders — survivors, social workers, advocates, oncologists and nurses — for their best advice on simplifying the process. Their tips can get you past the paperwork.
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.
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.
