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Step 1: See a Surgeon
After a positive biopsy the vast majority of women need surgery to completely remove the cancer. You'll usually be referred to a cancer surgeon—also known as a surgical oncologist. Often times the radiologist or your primary care physician will suggest a surgeon you should see. More than 50 percent of new breast cancer patients rely on this recommendation, as it opens doors and ensures you get an appointment quickly, says Leslie Montgomery, M.D., chief, division of breast surgery at Montefiore-Einstein Center for Cancer Care in the Bronx, New York. Women who select their own surgeon usually do it because of a doctor's reputation or because they want to be treated at a certain hospital.
Don't spend too much time debating whom to meet with first. You may ultimately switch to another surgeon (because you want someone more qualified or aren't confident about the treatment plan outlined by doctor number one). Be aware that you'll be hit with a load of information at this meeting. If you arrive prepared you'll feel less overwhelmed. What to do beforehand:
Enlist a friend. At every medical meeting you'll need a second set of ears. "The average patient hears only about half of what's said, so it's critical to bring someone along to hear the other half," says breast specialist Katherine B. Lee, M.D., assistant professor of surgery at the Cleveland Clinic Breast Center in Ohio. Whether it's your husband, sister or friend, this person should be a careful and calm listener, a good note taker, and, if possible, able to accompany you on most appointments.
Learn the cancer basics. Most likely you've been told what type of cancer you have by the radiologist and were given radiology and pathology reports. If not, ask for copies. The surgeon should carefully review these results with you, since they're the key to deciding on treatments. Familiarize yourself with these common terms before your appointment:
"Invasive" versus "ductal carcinoma in situ." Most breast cancers are invasive, which means the cells have broken out of the milk ducts or glands where they started; ones that are "in situ" are confined and are the earliest form of breast cancer, with the best prognosis.
Hormone receptor status. Some breast cancer cells have receptors that can be activated by estrogen, progesterone, or both. You'll be a candidate for hormone-blocking agents like tamoxifen or raloxifene (for postmenopausal women) if your cells have these receptors.
HER2-positive or -negative. About 20 percent of all breast cancers overproduce a protein known as HER2. These tumors tend to grow and spread fast, so you may need more aggressive treatment.
Compile your questions. Keep a list of all the things you want clarified and bring it to the appointment. One question to include: "Whom can I call if I have more questions after this appointment?" Don't be surprised if you can't get all the answers yet. For instance, a surgeon usually can't tell you how much a cancer has spread until after your operation.
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Step 2: Decide If You Need a Second Opinion
We've all heard the mantra: Get a second opinion. Still, only about 20 percent of women seek one, according to a recent study of almost 2,000 breast cancer patients. Even more surprising, many experts think that's okay: "It's outdated to insist a second opinion is always essential. Today, if a woman is being treated at a top-notch cancer center and she feels good about the specialists she's seeing, a second opinion just may not be necessary," says Megan Baker Ruppel, M.D., medical director of the comprehensive breast care program at Hollings Cancer Center at the Medical University of South Carolina in Charleston.
Consider sticking with one opinion if...
Your surgeon is associated with a National Cancer Institute-designated comprehensive cancer center. These centers offer a broad range of up-to-date treatment options, psychological support services and complementary and alternative therapies. And, most important, they foster close cooperation and communication among all the members of your cancer care "team," which may include a surgical oncologist (your surgeon); medical oncologist (the doctor who oversees chemo, hormone therapy, and all other meds); radiation oncologist (administers radiation therapy); pathologist (prepares the lab reports on your tissue samples); and plastic surgeon (performs breast reconstruction). Search "NCI-Designated Cancer Centers" at cancer.gov or call 1-800-4-CANCER for a nationwide list. You can probably safely skip seeing more doctors if you feel confident you have all the information you need to choose a course of treatment.
But you may need a second opinion if...
You'll be treated at a local hospital that doesn't specialize in breast cancer. Many community-based hospitals do have excellent multidisciplinary teams, says Dr. Baker Ruppel. One of your doctors (usually your surgeon) helps connect you with the other physicians needed for your treatment. These specialists have weekly conferences to discuss breast cancer cases, so you're assured your treatment plan is being assessed by multiple experts. It's a good sign if the team practices at a hospital with a cancer program accredited by the American College of Surgeons (click "Find an Accredited Cancer Program Near You" at facs.org/cancer). But if your local doctors treat many other cancer types as well, consider traveling to a larger comprehensive center affiliated with the NCI or to an academic medical center for a consultation. Chances are it will help confirm the information you've heard. If the second opinion happens to differ, you may decide to switch doctors, go for a third opinion, or use the new advice to guide the care you receive at your local hospital.
A second opinion is strongly encouraged if...The surgeon you've seen doesn't work with a team and doesn't practice at a hospital with an accredited cancer program. Several studies suggest that breast cancer patients have a higher likelihood of survival if they are treated by experienced surgeons at hospitals with a large volume of breast cancer patients.
You're confused about the approach being discussed. You should not feel pressured by your doctor to choose a particular course of action, be offered only one type of treatment, or have doubts about any aspect of the diagnosis or treatment plan you've been presented. "In these circumstances there is no question that it's in your best interest to get a second opinion," says Dr. Lee. "You need to be confident that you're receiving the best care possible." The American Cancer Society (cancer.org or 1-800-227-2345) can provide referrals to comprehensive cancer centers near you.
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Step 3: Consider Your Treatment Choices
Breast cancer treatment isn't "one size fits all," which means you may be faced with choices to make, both before and after surgery. Keep in mind, there's rarely a need to rush things, says Dale Collins Vidal, M.D., professor of surgery at Dartmouth Medical School in Lebanon, New Hampshire. "In most cases you can safely take a few weeks to mull over your options, get more advice, and develop a plan you feel confident with." The major decisions you may encounter:
Before SurgeryLumpectomy versus mastectomy. A lumpectomy (breast-conserving surgery) makes sense if your tumor is tiny and limited to one area, since the results won't be disfiguring. When combined with radiation afterward, women with relatively small breast cancers who have a lumpectomy are just as likely to be alive and disease-free 20 years later as women treated with a mastectomy (the entire breast is removed), according to two large studies. Still, a mastectomy might be a better choice if a lot of tissue (especially if in different areas) needs to be taken. And in many instances you won't need radiation if you have a mastectomy.
Reconstructive surgery. If you decide to have a mastectomy, think about whether you want surgery to re-build your breast—by law, this is a benefit your health insurer must cover. Immediate breast reconstruction often spares you a second operation and has the best cosmetic results. To learn more about the newest reconstruction options, including nipple-sparing procedures, search "Breast Reconstruction After Mastectomy" at cancer.org.
After SurgeryChemotherapy. Undergoing chemo to lower the risk of a cancer comeback is a given for most women, unless you have early-stage (I or II) estrogen receptor-positive breast cancer that has not spread to the lymph nodes (and you're undergoing hormone therapy). In this scenario your oncologist will order an Oncotype DX test, which analyzes the activity of different genes (from a tissue sample) that control the growth of cancer cells. Test results are reported as a "Recurrence Score" between 0 and 100. The lower your score, the less likely the cancer is to recur within 10 years of your initial diagnosis; higher scores indicate you would benefit from chemo. The trickiest score is between 18 and 31 because it doesn't provide a clear signal as to what the best course of action is.
External versus internal radiation therapy. External beam radiation, which is the most common type, is administered from a machine outside the body to the breast from which the cancer is being removed. Typically, you're given treatments five days a week for about six weeks. With internal therapy (a widely used type is MammoSite), radioactive seeds or pellets are placed directly into the breast tissue next to the cancer. This treatment is much faster—it's twice a day for five days. Not everyone's a candidate, but if you are, be aware that internal radiation is newer, so the evidence is still incomplete (although promising) as to whether it reduces the chances of a recurrence as much as the external version.
Hormone or targeted therapy. If your cancer is positive for estrogen and/or progesterone receptors, you can increase the odds your cancer won't return by 23 percent by taking anti-hormone pills such as tamoxifen, letrozole, or anastrozole. But these meds can cause fatigue, hot flashes, and mood swings. In fact, up to 50 percent of women quit taking them sooner than recommended. In some cases you may be able to switch to another type of hormone therapy if you're experiencing side effects. Work with your oncologist to find a regimen you can tolerate. If you have early-stage HER2-positive cancer, you'll need to decide whether to take the drug trastuzumab; it can lower your risk of a recurrence by 52 percent when used in combination with chemotherapy, but it may trigger serious heart complications in some women.
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The fine print on a health insurance policy is probably the last thing you want to think about now, but it's arguably the first thing you should give your attention to. Here's how to find out how much coverage you have—and what to do about any gaps.
Pick up the phone. You could read every word of your policy, but it's easier to speak with someone at your insurance company who will explain what benefits you have. Get details on procedure pre-approval rules and whether the policy pays the cost of a second (or even third) opinion. If you think you might need more insurance, ask if it is available. Keep records of what was said and when, and with whom you talked.
Don't be denied. If an insurance claim is turned down, find out why. Ask to speak to a supervisor if you're not satisfied with the information you're given by customer service. Enlist a doctor's help if fees, charges, or procedures are questioned. Most physicians have staff who have experience working with insurance companies. Your hospital or cancer center may also have patient representatives—professionals hired to act as advocates in case of a dispute with an insurance company.
Ask for assistance with bills. If you're underinsured, try to negotiate fees with your doctors. Some will "forgive" the amount not covered by your plan. Many hospitals will work with you to make special payment arrangements if you let them know about your situation. The Patient Advocate Foundation (copays.org) and CancerCare (cancercare.org) have programs to provide financial assistance for cancer patients, plus they can direct you to a variety of additional resources.
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Lean on Me
When Tracie Metzger learned she had breast cancer 10 years ago, she started looking for other women who would understand what she was going through.
Tracie felt a strong need to connect with women who had also been recently diagnosed. And since she was only 30, and her two oldest children, Trey, now 14, and Grace, 10, were so little, she particularly wanted to bond with other young moms. "I was worrying, 'Am I going to be around for these kids?'" she recalls. She reached out to two women who became her lifeline for the next year: Jamie Hoffpauir and Dawn Harvey (whom she'd met through her oncologist). All three were in their early 30s, all were moms, and all had been diagnosed within months of each other.
Everyday Help Tracie, Jamie and Dawn spoke on the phone often and went out to dinner every couple of weeks. When they were going through chemo, their bald heads and baseball hats attracted attention, but they didn't care. The emotional support and practical advice they exchanged was more than worth it. "Together we'd let out our deepest fears and concerns," says Tracie. "Things you didn't want to tell your mom or your husband because you didn't want them to worry." The friends were also a source of invaluable advice for one another. When Tracie dropped from 125 pounds to 102 during chemo, her friends recommended protein shakes for gaining back the weight. And they knew the right kind of mouthwash to help with mouth sores caused by her treatments. "We shared little everyday tips that you don't get from the Internet or from your doctor," says Tracie.
Reaching Others The three realized that their relationship was special, and when they finished treatment they invited other women to join them. "It was an informal moms' night, but we all just happened to have breast cancer," says Tracie. "Sometimes we'd talk about cancer for two minutes and then move on. We tried to keep it light." The group launched pinkribbongirls.org for women who couldn't make it to meetings and began providing meals and housecleaning to those undergoing treatment. Today, Pink Ribbon Girls has 3,000 members in 48 states who turn to one another for help in finding a doctor, deciding between a lumpectomy and a mastectomy, or figuring out what to tell their children, whether they're toddlers or teens.
Right for You Support groups abound, but finding the one that fits your needs isn't necessarily easy, says Tracie. "A lot of people start with their church, the local wellness center, or the American Cancer Society," she says. "If you feel like you need something moderated, these are the places to look." Or search out an organization with a mission that appeals to you. The Young Survival Coalition, for example, focuses on advocacy, while Susan G. Komen for the Cure concentrates on research. Getting involved can be an important step in recovery. Tracie recalls a new Pink Ribbon Girls member who was going through treatment. "Within a month somebody else was diagnosed and she was already able to act as a role model. She found that so empowering," says Tracie. "And anything that makes you feel strong is so important because when you're dealing with this, you're petrified. You don't know what to say to your kids, you don't know how your husband's going to deal. Being able to connect with someone who's just like you is the most wonderful gift."
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"I needed to be sure my treatment was right."
When Sarita Joy Jordan, a 41-year-old mother of four from Philadelphia, was diagnosed with breast cancer five years ago, she decided to seek a second opinion right away. "I didn't want to simply go along with what my doctor said." After doing a lot of research on the Internet, she traveled to a large cancer center for a consultation. "The place had none of the intimacy of the hospital where I first went, plus the doctors were accompanied by medical students, all of whom wanted a chance to examine my breast. I wasn't comfortable with that." The second opinion she received confirmed everything her first doctor had recommended (lumpectomy followed by eight weeks of chemo, 30 rounds of radiation, and five years of hormone therapy), so she decided to return to her original doctor's care.
"I don't think getting the second opinion was a mistake, even though it was time-consuming and not the best experience," says Sarita. "It helped me accept that I really had cancer—I secretly believed it might be a mistake—and even more important, it gave me confidence in the treatment I chose."
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"I kept notes on everything."
Two years ago 44-year-old Debbie Blevins, a mother of two teenagers from Louisville, Kentucky, had a breast-sparing lumpectomy, then chemo and radiation. From start to finish her treatment took eight months—and throughout the entire time she carried a big notebook with her everywhere. In it she wrote lists of questions to ask doctors, took notes on her appointments, and jotted down the names of all the drugs she was on. "I also wrote down every gift and meal I received," says Debbie. "I wanted to remember how wonderful and supportive everyone was."
Debbie says she wasn't good at record-keeping before being diagnosed with breast cancer. But the notebook helped her stay sane. "I was so stressed, and it was a huge help to have everything in one place," she says. In addition, Debbie had a plastic bin at home filled with medical information she received from doctors, a folder for receipts and bills, and a photo album that chronicled her treatment, including the day her husband shaved her head. "I often look back and see what a difference a year has made!"
Originally published in the October 1, 2010, issue of Family Circle magazine.
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