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 "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 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.

Don’t rush home. Depending how things go, you may need extra time in the hospital. "Ask your surgeon how long you can expect to stay," Attai says. "Most women will be comfortable going home 24 to 48 hours after a mastectomy. But if your surgeon says you’re only going to stay 24 hours, ask if you’ll be able to get more time if it’s medically necessary," she says. "You shouldn’t feel that you’re getting pushed out."
To Make Things Easier At Work
Know your rights. Many cancer patients keep their jobs through treatment. "Before you negotiate with human resources about time off, find out your rights under the Americans with Disabilities Act," Spicer says. Read your employee handbook to find out what your benefits are during treatment. If your boss gives you a hard time, click on the link below for help finding legal resources. The National Coalition for Cancer Survivorship offers a booklet on employment rights. Go to the publications section and click on "Your Employment Rights as a Cancer Survivor" to get a PDF.

Know when you need a note from your doctor. "If you’re having a problem getting time off, ask your doctor to send a letter to your boss stating your need for treatment," says Ann Marie Rappa, RN, case manager of the Columbia University Cancer Screening Program in New York City. Most employers are more sympathetic when they see the situation validated.

Ask your employee assistance program for help. Most employee programs offer resources to help people cope with a diagnosis and the emotional, legal, and financial concerns that come with it. For information, talk to your HR department and/or your spouse’s HR department.
To Make Things Easier on Your Wallet
Don’t get in deeper than your pockets. "Understand what your insurance covers and what is your financial responsibility," says Jeralyn Cortez, outreach coordinator for the Memorial Sloan-Kettering Cancer Center-City College of New York Partnership Community Outreach Program. Call the customer service number on the back of your card before a treatment or procedure takes place and ask if it’s covered.

Pay in cash, says Michelle Katz, author of Healthcare for Less. "You’ll have more negotiating power. If a procedure is not covered by your insurer, you may be able to negotiate 50 percent off the full amount. If it is, you may be able to negotiate the amount not covered by about 50 percent, or even work out a payment plan for the rest." Here are other tips she offers for people with limited or no insurance or prescription drug coverage:

    * Know that outpatient facilities cost less than a hospital stay. They have less overhead and fewer operating costs.
    * Look for state government programs that can save you hundreds of dollars. Do an Internet search with your state name (for instance, "New Jersey" and "Department of Health") to find out about money allocated for breast cancer treatment.
    * Look for discounted drugs if you don’t have prescription coverage. Almost all drug companies offer compassionate drug use programs.

Laura Weil adds: “Often, Hospitals’ Financial Assistance Offices (once called "charity care") can negotiate bills down from the self-pay rate (what the uninsured get socked with and the most expensive rate) to something more like the Medicaid rate, which is much less expensive—or even nothing.  You don’t have to be paying cash to do this; you just have to prove that you can’t afford to pay.  Of course, this will only affect hospital charges. You need to negotiate with individual doctor’s offices separately.”

Take down names when talking to your insurance provider. "Always write down the name of the representative and take detailed notes," Shaffer says. You’ll want to know who provided coverage information in case a claim is denied. "If the person can’t give you a clear answer, ask for a supervisor," she says. Also, ask to be assigned to a case manager. She can explain protocols and help expedite authorizations for treatments.

Fight insurance denials. "Don’t be overwhelmed by a denial," Smith says. "Many states have agencies to help resolve disputes." Do a Google search for health advocacy agencies using your state’s name and words such as "ombudsman" or "health care advocate."

To tackle the problem with your insurer yourself, contact someone in the utilization or case management department and ask to discuss the denial. The first level of appeal involves submitting documentation explaining why an exception should be made.

"A persuasive letter from your oncologist goes a long way in getting tests covered," Weiss says. "It should state the purpose of the test and the question at hand. A request for an MRI is weak; a request for an MRI to rule out cancer because a patient has a history of cancer and irregular breast tissue is stronger."

Reconcile your medical bills to protect yourself from overcharging and possible coverage denials. While you’re in the hospital, keep a diary of all your medicines, including shots. Before you leave, get an itemized bill, says Katz. Match it up against your notes and the bill that comes in the mail. If it doesn’t track, bring everything to your next doctor’s appointment and ask him or her to explain confusing charges. If there’s a discrepancy, the doctor’s office may be able to talk to the billing department to straighten things out.

"Don’t let the billing department put you off by telling you, ‘Don’t worry, your insurance will cover it,’" Katz says. "You’ll need specific details to challenge a discrepancy, so it’s better to address it when the experience is fresh." Notify your insurer about any discrepancies. If you are unable to resolve your dispute, she says, send your complaint in writing with copies of the bills to the office of consumer affairs of your state’s attorney general’s office.

If you have trouble getting payment from your insurer, go to the Alliance of Claims Assistance Professionals for a referral to someone who can help, Katz suggests.

Originally published in MORE magazine, October 2006.
Updated October, 2009





First Published Mon, 2009-04-06 18:04

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