Publications
Insight, Fall 2008
In our fall issue, learn about noninvasive breast cancers like ductal carcinoma in situ (DCIS), practical methods for coping with the financial strain of treatment and new resources for living with metastatic disease. Artist Suzanne Cogan shares the story of her recent treatment for early-stage breast cancer.
Table of Contents
DCIS: What to Expect Before, During and After Treatment
Rita Cupingood, 61, of East Norriton, Pennsylvania, had her first mammogram before age 30 because she has a family history of breast cancer. At age 50, after an enhanced mammogram with magnification, she conferred with a breast specialist who gave her a clean bill of health.
That’s one reason Rita was so surprised one year later when her mammogram showed a suspicious pattern of calcifications, or buildups of calcium in body tissue that normally are noncancerous but when clustered together can indicate early breast cancer. Rita had a guided surgical biopsy. When her doctor found ductal carcinoma in situ, commonly referred to as DCIS, she had further surgery to remove the remaining area of her breast that contained the cancer. After, she had radiation treatment.
DCIS, also called intraductal carcinoma, is a noninvasive, stage 0 cancer in which abnormal cells are found in the lining of the breast duct. Unlike in invasive disease, the cancer in DCIS has not "invaded" the surrounding tissues of the breast.
DCIS is considered stage 0 because it is "in situ," meaning the cancer stays in the same place where it began. DCIS does not have the ability to travel to the lymph nodes or other major organs. It is the earliest form of breast cancer, and by itself is not life-threatening.
Diagnosing In Situ Diseases
If you are coping with ductal carcinoma in situ, you are not alone. According to the American Cancer Society, more than 62,000 women are diagnosed with DCIS each year in the United States.
"As mammography becomes more and more utilized and breast health awareness is higher in this country, the number of women diagnosed with DCIS is increasing," says Powel H. Brown, MD, PhD, of the Dan L. Duncan Cancer Center at Baylor College of Medicine.
Mammography is the most common way to detect DCIS, but needle and surgical biopsies are necessary to confirm the diagnosis. Depending on your age, family history and breast cancer risk factors, ultrasound and magnetic resonance imaging (MRI) also may be used.
DCIS is different from LCIS, or lobular carcinoma in situ, a stage 0 legion in which too many cells fill the breast lobule without invading through the lobule into the fatty part of the breast. LCIS is not considered cancer, but having it means you are at higher risk than the average woman for developing invasive breast cancer in the same or opposite breast.
If you are diagnosed with LCIS, your surgeon will perform an excisional biopsy that removes more tissue to make sure DCIS or invasive cancer is not also present in your breast. To reduce the risk of your developing cancer later, you may be offered either more aggressive screening with mammography and other tools or a course of hormonal therapy with tamoxifen or raloxifene (brand name: Evista). You also may choose to have a bilateral prophylactic mastectomy, removal of both the breasts. Learn more about LCIS.
The Pathology Report
Before you can make treatment decisions for DCIS, your breast surgeon will perform a surgical biopsy that will provide you and your team with critical information to decide next steps.
During the biopsy, the surgeon will remove as much DCIS as possible. A pathologist will measure the size of the area around the DCIS and find out whether any cancer is found along the margins, or edges, of the surgically removed area. An excisional biopsy may be necessary if the surgeon does not get clear margins.
When you receive your pathology report, ask your doctor to point out the size and location of the area where DCIS was present, the pattern of the cancer cells and whether abnormal cells were found in the margins of the removed area of your breast after surgery. Also, find out how these factors affect the types of treatments for which you are eligible and whether you will need additional surgery, says Dr. Brown.
Among the things you should learn is where in your breast the DCIS was found. This information may help determine surgical options. If one quadrant, or quarter, of the breast contains an area of DCIS, your pathology report will indicate that you have unifocal DCIS (found in a single area). If more than one area of DCIS is found in one quadrant, the DCIS will be called multifocal. A diagnosis of multicentric DCIS means that more than one quadrant contains DCIS.
Your pathology report also will tell you what proportion of the DCIS cells are dividing, which indicates how aggressive the cancer is. DCIS is divided into three grades based on the growth pattern of the abnormal cells. With grade 1 (low grade) and grade 2 (moderate grade) DCIS, the cells tend to grow more slowly than with grade 3 (high grade) DCIS. High grade DCIS contains fast-growing cells and an area of dead (necrotic) cells in the center of the tumor, called comedo necrosis.
Make sure to tell your medical team if you have a bloody discharge from your nipple, as this indicates cancer may be in the main milk ducts of the breast.
Ask your doctor if your pathology report shows microinvasion, which is characterized by a few cancer cells "breaking" into other tissue in the breast. Lymph node biopsies are uncommon with DCIS, but your doctor may recommend a biopsy of a sentinel node, or a first node in your underarm where the cancer is likely to travel, if your pathology report shows microinvasion.
"Microinvasion with DCIS suggests that a woman has the potential for developing more invasive breast cancer," says Dr. Brown. "A woman [with this diagnosis] might choose to receive radiation or tamoxifen more readily than if she didn’t have microinvasion."
The pathologist also will test the cancer for estrogen and progesterone receptors, as well as several other "markers," to figure out whether it will respond to medicines that could keep it from coming back or turning into invasive disease.
Making Treatment Decisions
The standard treatment for DCIS is lumpectomy plus radiation therapy or mastectomy, usually without radiation. Lumpectomy is breast-conserving surgery to remove the area containing the cancer; radiation uses high-energy x-rays, gamma rays, neutrons and other sources to kill the abnormal cells. Lumpectomy plus radiation reduces the risk of recurrence up to 30 percent in DCIS. You still may need to make decisions about the type of surgery (lumpectomy versus mastectomy) and whether to have radiation therapy or take hormonal treatments.
Arlyn Grant, of Orlando, Florida, was diagnosed with DCIS in 2007 at age 42. Her doctor recommended the standard treatment, but Arlyn wanted to find out if she had other options.
"I went home and researched my pathology report," she says. "The DCIS was multifocal and grade 2 with comedo necrosis and no microinvasion. After looking at mastectomy, I decided that I couldn’t take that much time off work. I decided that radiation was a good way to go just to make sure there were no stray cells."
Many doctors use the Van Nuys Prognostic Index, a scale that assesses risk of recurrence, to determine whether more treatments are needed after surgery, says Dr. Brown. The index takes into account the size of cancer, width of the margin, cancer grade and a person’s age to assess the likelihood that DCIS will return as invasive cancer.
"For a very small, low grade DCIS, the chance of the DCIS evolving into invasive breast cancer is very low," says Dr. Brown. "Radiation is still an option in this case, but some women choose not to have it because they do not feel that the benefits of radiation are worth the side effects, [which include fatigue and skin problems]."
Peggy Drake, 57, of Cranberry Township, Pennsylvania, ruled out radiation when she was diagnosed with DCIS eight years ago. After three biopsies that did not achieve clear margins, her medical oncologist suggested a mastectomy. Aware that the standard treatment for DCIS was lumpectomy plus radiation, Peggy confirmed her medical oncologist’s recommendations with a radiation oncologist.
"The radiation oncologist said the radiation really wouldn’t eliminate more than half of the chance that the cancer might come back [in my particular case]," she says. "He reinforced the recommendation that I should have a mastectomy."
In some cases, mastectomy may the preferred option if you have a strong family history of breast cancer or extensive DCIS found in multiple areas in the breast, says Dr. Brown.
If you have a mastectomy, you can choose to have your breast reconstructed immediately after your surgery or months or years after treatment ends. Peggy decided to have breast reconstruction following her surgery. For more information, read the article on "Breast Reconstruction: Options, Expectations and Alternatives" ) from the summer 2008 issue of Insight.
After Initial Treatment
Depending on your circumstances, you may have more treatment after surgery and radiation. Most notably, if the DCIS is hormone receptor-positive, you may benefit from five years of the hormonal therapy tamoxifen, says Dr. Brown. Hormonal therapy, a systemic (whole-body) treatment, lowers the risk of recurrence in hormone-sensitive breast cancers.
Tamoxifen is the only hormonal therapy approved by the U.S. Food and Drug Administration for use in DCIS, but clinical trials are studying the effectiveness of the aromatase inhibitors in postmenopausal women. Ask your doctor if you may be eligible for a study.
If you take tamoxifen, your doctor will perform regular exams of your uterus, because this medicine slightly increases your risk of developing endometrial cancer.
You should see your doctor regularly for screenings, either with mammogram or other tools depending on all your risk factors for developing invasive breast cancer.
Peggy, who took tamoxifen, continued with regular mammograms of her reconstructed breast and saw her medical oncologist every three months to check her progress. Rita, who also took tamoxifen, had medical exams every four months for the first five years. She got annual mammograms, which were repeated in six months if results were suspicious.
Your Emotions
Because DCIS is a noninvasive cancer, some people do not understand the impact the diagnosis may have on you and your family. Well-meaning persons may try to console you by saying DCIS is "not so bad" or "easy compared to other stages of breast cancer" or telling you that "you are lucky." You may even have some of these thoughts yourself and find yourself asking, "Why do I feel so sad when I should feel fortunate?"
"It’s a mixed bag with stage 0 [cancer] because you are happy that you caught it early, but it was hard for me to find women in the breast cancer community to talk to who don’t have a higher stage of cancer," Arlyn says. "My doctor [told] me that I really didn’t have breast cancer [because DCIS is noninvasive]. Then why am I seeing an oncologist? Why did I have to have surgery and radiation?"
Try not to let these comments and questions chip away at your emotional well-being. Remember that even though DCIS is early-stage cancer, you too have gone through breast cancer diagnosis and treatment. The disease may have been noninvasive, but you have just as much right to feel, express and grapple with the emotions—fear, trauma, anger, uncertainty and more—as women with invasive cancers.
Many women who have been treated for DCIS worry about recurrence. Rita and Arlyn spoke with their peers about their experiences and their concerns, and Peggy and Rita seek information through LBBC teleconferences and networking events.
If you want to talk about your worries, or you have questions about treatment options, call our Survivors’ Helpline at (888) 753-LBBC (5222) to talk to someone who has been there. We can match you with a volunteer who has been treated for DCIS.
Facing the Financial Challenges of Breast Cancer
It seems absurd and totally unfair: Not only are you faced with a diagnosis of a serious and scary disease, but also on top of all the anxiety about your health, you have to keep track of medical bills, insurance premiums, co-pays, disability benefits and a whole alphabet soup of medical-financial acronyms.
The temptation might be to focus on your health now and put off dealing with the finances until later. But in the long-term, that’s not a good idea at all.
However unfair it may seem, you need to take charge of both your treatment plan and how you’re going to pay for it. The two most important steps in taking care of your financial health are:
1. Being honest and open about your financial situation.
2. Finding the best guides to help you navigate the system.
Remember, you deserve the best treatment—no matter how you pay for it.
If You Have Health Insurance
1. Understand how your insurance works
As soon as possible, figure out how your health insurance works. Irene C. Card, president and founder of MIC Insurance Services, says it’s crucial to understand your policy so you can get the most possible coverage for the tests, procedures and treatments that you’ll need.
You don’t have to spend hours reading manuals or Web sites. Call your insurance agent or company, tell them you’ve been diagnosed and ask about these key issues:
- What’s the "stop-loss" or "maximum out-of-pocket (MOOP)" payment on your policy? This is the amount of money you have to pay for healthcare costs, beyond which your policy pays 100 percent for the rest of the year. It’s like a deductible on your car insurance. Finding out right away what your MOOP is will let you know how much you’ll be expected to pay before the insurance kicks in.
- What’s the difference in coverage for in-network vs. out-of-network providers? Most insurance plans have a list of providers they cover. Providers are doctors, hospitals, clinics, etc. If you use a provider that’s out-of-network (not on your plan’s list), you "open the door for huge expenses," says Ms. Card. Get a list of in-network providers right away and stick with it as much as possible; check the list on your carrier’s Web site frequently, since providers change often. If you’re taken to a hospital without having time to choose a provider, negotiate with your insurance company to get it covered.
- What are your co-pays? A co-pay is the amount you pay for each test, visit, procedure, etc. in addition to what your insurance covers. Your co-pays may be just $10 or $20 per test or doctor’s visit, but they can add up. If it gets overwhelming, there are ways to make payments manageable.
- Does your insurance plan require pre-authorization from a doctor for hospital admissions, procedures, tests, etc.? Almost every insurance plan requires a phone call from a doctor’s office to the insurance carrier to authorize hospital admissions or big medical procedures. Without the pre-authorization, Ms. Card warns, your plan might not cover the admission/procedure, and you’ll be stuck with a huge, avoidable expense. Moreover, she says, "it’s not enough to let your doctor know you need pre-authorization. Call the insurance company to make sure the doctor’s office called. Say, ‘I’m scheduled to go in on such a date for such a procedure, and I want to make sure my doctor’s office called and had it pre-authorized.’ Then, get a confirmation number and add it to your medical expense file."
- What medicines are "on formulary" for your insurance plan? When you call your insurance company, find out where to get a list of medications covered by your plan. Most insurance carriers also publish the list on their Web sites. If your doctor wants to prescribe a medicine that’s not on the list (off-formulary), the insurance company may not pay for it. It’s important to look up every medicine your doctor prescribes right away. If it’s not on formulary, you can take steps to get help paying for it.
2. Ask your insurance company for a case manager
Health insurance companies have certified nurses and social workers who specialize in different medical areas and help manage communication among you, your doctors and the insurance company.
Your insurance company might not tell you there are case managers available. Don’t let this stop you. You can ask for, and insist on getting, a case manager assigned to you. This gives you a single person to call at the insurance company, and someone who can help you navigate the system and make sure all the paperwork is done so you get covered.
3. File for disability
Tanya Walker RN, BSN, senior clinical case manager at the Patient Advocate Foundation, advises anyone with breast cancer who might not be able to work for any length of time to file right away for disability benefits from the federal U.S. Social Security Administration. Whether or not you have health insurance, Ms. Walker says, "You can never be sure what’s going to happen down the line. You might not be able to go back to work after treatment, and it can take months for your claim to go through." Other important questions about your work situation and disability include:
- Will you be on long- or short-term disability?
- How long will you be out of work?
- Have you paid into Medicare? When will you be eligible for it?
When Insurance Is Not Enough
One of the biggest problems many people with serious illnesses face is underinsurance. This means that even though you have health insurance, it doesn’t cover everything and requires more out-of-pocket payments than you can afford.
This can happen even to people with "pretty good" health insurance. Barbie Maybee was diagnosed in August 2007, at age 40, with Stage IV breast cancer.
"I have insurance, but even so, the co-pays, deductibles and out-of-pocket maximum add up very quickly," she says. "I had $360 in co-pays for one visit during radiation. Even though it was a single visit, there was a separate co-pay for each film and for every test."
If this sounds familiar, here are some steps to follow:
1. Don’t panic—help is out there
It’s upsetting to be in this situation, but there is help available. Dianne Hyman, RN, BSN, OCN, oncology nurse coordinator at Cooper University Hospital in Camden, New Jersey, says, "There’s a lot of help out there, especially for breast cancer patients, but you really need to not be ashamed and ask for it. Open up and share your situation."
2. Follow the steps under the "If You Have Health Insurance" section
3. Find someone to help you navigate the system
Don’t wait until you feel overwhelmed to ask for help. As soon as you’re diagnosed:
- Ask your insurance company for a case worker to manage your insurance issues.
- Ask your doctor’s office for a social worker to help with finding sources of financial help as well as emotional support.
- Call the Patient Advocate Foundation. For contact information and more resources, visit our Web links page and click on "Financial Support."
4. Get on a payment plan
As soon as you start getting medical bills that you can’t pay in full, call your insurance company or doctor’s office and ask to be put on a payment plan. Be honest about your situation. Tell them how much you can pay a month, and stick to the plan. Barbie explains: "When you get the bill that says ‘must be paid in full’ or when you see a sign at the doctor’s office that says ‘co-pay must be paid at time of service,’ it can make you worried and overwhelmed. Don’t let it scare you. Ask about a payment plan. And don’t be embarrassed, because as long as you keep the communication open, it’s OK. It’s people who don’t call that they go after. Don’t put it off."
5. Get help paying for medications
If your insurance doesn’t cover the medications your doctor prescribes, ask for help right away:
- Ask your doctor’s office for a social worker or nurse to help you apply for state and federal grants and other financial assistance.
- Call the Patient Advocate Foundation. They can help you figure out what letters or other information your doctor needs to send the insurance company to try to get the treatments covered.
- Many pharmaceutical companies provide medicines at little or no cost if you cannot pay for them and meet income requirements. For contact information and more resources, visit our Web links page and click on "Financial Support."
- Ask your doctor about enrolling in a clinical trial. Ask whether the trial covers tests and doctor’s visits, as well as treatments. Clinical trials at the National Institutes of Health generally cover all expenses but may require a lot of traveling.
If You Have No Insurance
You deserve the best treatment possible. If you do not have health insurance, there is help out there, and in many cases you can get most or all of your expenses paid through state and federal programs.
The most important thing to remember is: if you need financial help, you have to ask. Because, as Ms. Hyman emphasizes, "Nobody knows you’re in need if you don’t ask."
Ruth Hill, of Camden, New Jersey, is 66 years old and has had breast cancer three times. She says, "The first and second time [I was diagnosed], I was working and had insurance. The third time I didn’t have insurance. It makes you reluctant to go back for appointments, so I just don’t go."
If you’re facing a situation like Ruth’s, you may feel a similar sense of despair. But it’s so important to stick with your treatment plan and get help.
It takes a lot of energy and determination to ask for help, and when you’re dealing with a serious illness like breast cancer, who has that extra energy? If you feel you can’t do it yourself, ask family members, friends, colleagues or a trusted member of your faith community to help connect you with a social worker from your doctor’s office, clinic or hospital. Once you have a person to call, it can make things much easier.
If you do not have health insurance, you may be eligible for federal programs:
- Medicaid and Medicare pay the health costs of people without health insurance.
- If you are screened and diagnosed under the National Breast and Cervical Cancer Early Detection Program, your treatments are covered by Medicare, through the Breast and Cervical Cancer Prevention and Treatment Act of 2000.
Insurance Dos and Don’ts
Dos
- Do call your insurance company as soon as you’re diagnosed. If you’re in treatment and haven’t called them yet, do it now.
- Do ask your insurance company to assign you a caseworker. A caseworker is a trained nurse or social worker who serves as a liaison for you, your doctors and the insurance company.
- Do work with your insurance company, not against it. As Leslie Terr, CSW, OCSW, a social worker specializing in breast cancer, advises: "Instead of being nasty after you’ve been passed on to the fifth person (and even though you feel like screaming or hitting someone), say politely, ‘Hi, how are you? You’re going to help me, aren’t you?’ You’ll have a much better chance of getting what you need."
- Do keep a detailed medical expense file on all your interactions with your insurance company, hospitals, clinics and doctor’s offices. Every time you call the insurance company, start a new page. Write down the time of your call, the name of the people you talked to and their department, what they said and any confirmation numbers they give you. Every time you get a bill or a letter from your insurance company or from a healthcare provider, put it in the file.
- Do pay your insurance premiums on time. Otherwise, you risk having your coverage cut off or interrupted.
DON’Ts
- Don’t feel like you need to navigate the complex health insurance system alone. There’s a lot of help out there, but you have to ask for it.
- Don’t hesitate to ask for help.
- Don’t wait until the last minute to find out what your insurance covers or how your plan works. Call and learn about your plan even before you go in for your first treatment or doctor’s appointment.
- Don’t treat your insurance company like the enemy, and don’t assume they want to make your life miserable (even if it sometimes feels like they do). Most insurance companies want to work in cooperation with you and your doctors to take care of claims and payments.
- Don’t ask your doctor’s office to explain your insurance benefits. There are too many policies out there, and your doctor can’t possibly keep track of them all. You need to find out about your specific policy directly from your insurance company.
- Don’t rely on anyone else’s stories about insurance. Again, every insurance plan is different. Just because a friend or relative had a bad experience doesn’t mean you will, too.
- Don’t hesitate to ask your doctor’s office for referrals, pre-authorizations and letters to support claims. It’s your right to get the treatment you need, and it is your doctor’s (and the office staff’s) job to help you get it.
- Don’t let your insurance lapse or leave any gaps in your coverage. If you lose your job, get divorced or go through other major life changes, call your insurance company right away to make sure your benefits aren’t cut off abruptly and to make plans for alternative coverage if you need it.
A Portrait of Healing: Suzanne Cogan’s Story
Suzanne Cogan was the picture of health. The Julliard-trained performing artist was nearly as fit as when she sang and danced on Broadway. It was September 2007, and she was writing her first book—a memoir about her arduous first marriage. At "60-something" years of age, she still exercised every day. She had just finished a swim when her hand ran across "a hard, pea-shaped object" in her left breast, near her armpit.
Her doctor ordered a sonogram; the mammogram Suzanne had six months earlier revealed nothing. The sonogram was normal. Suzanne’s instincts told her to "err on the side of caution."
Suzanne waited two weeks to get an appointment. The surgeon performed a needle biopsy—without anesthesia. Suzanne could not withstand the pain. The surgeon directed her to schedule an in-hospital excision, then quickly dismissed her. Her discomfort with the doctor’s manner led her to seek out another surgeon.
The new doctor scheduled a lumpectomy within a week and found a 1 centimeter cancer, which tested positive for estrogen and progesterone receptors. Further tests showed Suzanne’s lymph nodes had no cancer and no further surgery would be needed.
The oncologist recommended radiation and referred Suzanne to NYU Medical Center, where she was admitted to a clinical trial aimed at determining the ideal position (traditional or prone) for radiation of the breast. A three-week protocol stretched to four when Suzanne’s treatment was interrupted by the December holidays and a debilitating herniated disk in her back.
She endured typical side effects of radiation, especially extreme skin irritation. Suzanne replaced her surgical dressings three or four times a day, and she used creams, Vitamin E oil and cold compresses to soothe the burns.
When her doctor recommended hormonal therapy, Suzanne balked. She had conducted research on the side effects of tamoxifen and aromatase inhibitors, and was fearful she would develop osteoporosis. She had been previously diagnosed with osteopenia.
Through her research, Suzanne learned about the Oncotype DX test, which predicts the risk of the cancer returning and is helpful in determining the course of treatment. Suzanne’s oncologist did not utilize the test in her practice, so Suzanne changed doctors.
"It was very important for me to find a doctor who would take my input—and me—seriously," she says. "If you don’t like what you hear, or if the information you’re getting doesn’t logically compute or feel right for you, get a second opinion."
The new oncologist ordered the Oncotype DX test on the tumor sample. Suzanne also discovered the 2D6 gene test, which determines how well the body breaks down tamoxifen and some other medicines. She ordered the test herself through an online company called DNA Direct. The results were encouraging, and Suzanne brought the report to her doctor.
In July, Suzanne started the lowest recommended dose of tamoxifen. Her doctor monitors her body’s reaction using annual bone density scans, blood marker tests and uterine sonograms. Suzanne follows ongoing studies of hormonal therapies as she considers her long-term options.
When Suzanne was first diagnosed, she was too busy moving from one procedure to the next to get caught up in her emotions. But when the reality of the situation hit, it hit hard.
"It’s like you’re driving down a highway, and something is coming toward you," she says. "You have no way to escape. It will hit, it’s just a matter of when."
For Suzanne, it hit after she finished radiation. "I would alternate between very cool and rational—accumulating facts and data and options—and total meltdown," says Suzanne. "When I realized this was not something I could control, I collapsed. I remember curling up in the fetal position, unable to move for the whole day. I was suddenly faced with my own mortality. I thought, ‘Now I know I am going to die.’"
Suzanne decided to see a therapist with experience working with people with cancer. The therapist asked Suzanne what gave her the most pleasure and encouraged her to do more of it. Suzanne found solace in music, reading, meditation and nature walks.
"Find the activity that is most important to you, or do the thing you always wanted to do," says Suzanne. "You need something to look forward to instead of your next treatment. If you think only about the cancer, you lose your sense of self."
Suzanne also learned that she was not helpless. "Focus on the things you can control. Make careful decisions as to where you put your time and energy, cut out the negative and the waste, and be OK with it. We are in charge of our lives, whether it’s questioning the doctors, or looking forward to an activity you enjoy. Whatever turns you on, just go for it."
Suzanne practices yoga daily, and she believes in the benefits of healthful eating. She works with a nutritionist and avoids refined and processed foods, opting for organic produce and whole grains.
She also steers clear of people who are not positive, and is grateful for the support of her son and her husband of four years. "My husband and I are the poster kids for doing it right later," she quips.
Most important, says Suzanne, "I do not define myself as a cancer victim. I am someone who had breast cancer. Today, I am fine. While it’s never completely out of my consciousness, I try not to let it run my life. I prefer to see cancer as one color out of many in my portrait."
