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Missing Pieces

A doctor’s perspective on what we don’t hear and what we should know about breast cancer

“Women agonize over cancer; we take as personal threat the lump in every friend’s breast.”—Martha Weinman Lear

   Ms. Lear, a health care writer and advocate, has aptly characterized breast cancer as a disease that strikes not only women individually, but also threatens the entire community of women. The statistics are sobering—it is the second most common cause of cancer in females (next to skin cancer) and is the second leading cause of cancer deaths in females (next to lung cancer). This year, there will be more than 200, 000 new cases diagnosed and more than 40,000 deaths from breast cancer in women in the United States.
   But the news is not all bad. The vast majority of breast lumps, about 80 percent, prove not to be cancerous. For women diagnosed with breast cancer, both the number of patients cured and the long-term survival of others have been increasing for the past two decades due to earlier diagnosis and more effective treatments. These figures will only continue to improve, owing to extensive research in many areas—better diagnostic modalities for early detection, improved surgical procedures, a more complete understanding of tumor cell biology and molecular genetics and more effective pharmacotherapy tailored specifically to the individual patient. There are currently a number of promising areas, including a new understanding of the relationship between breast cancer and estrogens, a possible preventive role for vitamin D, as well as new drugs that might actually forestall tumors in genetically predisposed women.  Compared to a generation ago, breast cancer has become a manageable, and in many cases, a curable disease.
   Today, much of the relevant breast cancer information is available and readily accessible, not only through your doctor’s office or local medical center, but via the American Cancer Society, the National Institutes of Health, Women’s Health Initiatives and a number of valuable websites on the Internet. These are resources to take advantage of—the more you know, the less anxiety you will feel.
    But some observations and advice are best gleaned through the personal experiences of patients with breast cancer and the doctors caring for them. For this article, I talked with two women with breast cancer who have received chemotherapy, one of whom happens to be an oncologist. I also talked to two doctors—one, a local surgeon who is a national leader in the field, and the other, one of the country’s top breast cancer researchers. Generalizations about an area as complex as breast cancer are fraught with hazards and some recommendations may not be right for everyone. Nevertheless, the four interviewees were fairly consistent in their thoughts. Below are some of their observations:

Be Your Own Patient Advocate
   The first and most important point—if you’ve noticed a lump or other breast abnormality, take it seriously. Don’t put off getting an answer and don’t be afraid of returning to the physician until you have an answer as to what it is. Denial remains an obstacle to early diagnosis, and early diagnosis is the key to treatment.                           If the lump turns out to be breast cancer, once you’ve been diagnosed, your life becomes an emotional roller coaster, with all the attendant highs and lows. Swings in emotion are part and parcel of breast cancer—fear of the diagnosis, anxiety waiting for lab results and tests, reluctance to bother busy physicians and frustration with bureaucracy and insurance companies (if you’re fortunate enough to have insurance). These are normal reactions, and you must work to remain in control. Coordinate your goals with your health care team. It may be an uphill fight, but it is not an insurmountable struggle.
   In your initial meetings with your doctor, bring a spouse or trusted friend for support, someone who will maintain equanimity. Come prepared to assimilate lots of information by bringing in well-thought, written questions. Be assertive, but polite, with information you require, especially issues like therapeutic alternatives and side effects of therapy.
   Listen closely to what your doctor says, write down relevant answers, and don’t let important details fall through the cracks. Between treatment regimens, side effects, testing schedules and how to cope, it’s easy to be overwhelmed. Ask the doctor, or nurse, if they can provide a written care protocol, instructions and a schedule indicating important appointment intervals, as well as dates and times of post-op care, testing and chemotherapy. At every point of your care, always remember to speak up for yourself.
   You will have no better allies than intelligent, caring physicians and nurses. Nevertheless, if your insurance and time allow, feel free to ask your physician to seek a second opinion, with the assurance it’s no reflection on him or her. It’s important to hear different options and the differences of opinion on the treatment of different lesions depending on your particular case. Ask whom they would go to (or send a family member to).
   Breast cancer is a difficult disease to deal with and more difficult if you’re alone. Make use of the best support team you have—family, friends and neighbors. Talk to other people with breast cancer and share experiences. The computer can be a godsend. Besides providing informational websites and support groups, it offers interactive websites where you can tell your story and listen to those of other people, from your neighborhood or other parts of the world. It’s an effective way of sharing information without having to constantly retell your story. An interactive website is also a good way of keeping a diary of your experiences.
   Besides complications that required hospitalization, some of the more bothersome complications the patients I talked to mentioned were chemotherapy-induced hair loss (expensive wigs were not always better and some support organizations offered more affordable wigs that were just as attractive, while some women simply opt for bandannas), postoperative lymphedema (arm swelling), often managed best with special massage by an experienced nurse or therapist, and skin rashes so severe they required consultation with a dermatologist.
   If you have children, when they are old enough, be open about your disease. Talk to them about it and answer their questions. Once you have breast cancer it is a part of your life forever, and it’s impossible to hide from your children. Once you’ve told your children, discuss the situation with a responsible adult at their school.

Confidence in Caregivers
   The outside world can be a threatening and unfriendly place to a breast cancer patient. The patient will interact with a multidisciplinary team consisting of physicians, surgeons, oncologists, radiologists, chemotherapy nurses, social workers, physical therapists and others. This can be intimidating and not every patient has a primary care doctor involved with the breast cancer care. In some centers, the primary care role has been minimized, but a good primary caregiver can be a facilitator to coordinate care. Confidence in the delivery system is crucial to the patient. (In a charity clinic where I work, some women without insurance won’t go for free screening mammograms simply because they lack confidence in the centers they are sent to.) Every caregiver, especially on initial encounter with the patient, must recognize and appreciate the patient’s vulnerabilities and fears and strive to win their confidence.
   Both competence and a caring nature are indispensable characteristics for everyone working on a breast cancer team. Though competence is essential, most patients don’t appreciate the competent but “cold” caregiver.  Next to the actual care the patient receives, the most important aspect of their treatment is the information they receive and how it is imparted. Yet many studies have documented shortcomings in how professionals deliver information to patients.
   Whenever possible, patients should receive bad news in person. It is generally preferable to have the patient come to the office rather than explain complicated information over the phone or via email. However, the phone and email have their place. When the doctor or nurse receives and returns messages from patients in a reasonable period of time, it demonstrates their concern and minimizes patient anxiety. In addition, small gestures can be important. Hospitalized patients appreciate the concern of a doctor who may not be active in their current care, but who stops by anyway, if only for a moment to say hello.
   From the time of the diagnosis, through every stage of treatment, clinicians are confronted with a whole host of diagnostic and therapeutic options. Often, the “right answer” is not known with certainty or is changing according to the medical literature. In individualizing therapy, physicians should explain therapeutic options to the patient. When time (and insurance companies) permit, if the patient asks for a second opinion, the physician should make it easy for them to obtain pertinent medical records.
   Every caregiver, whether they are performing surgery, delivering radiation or chemotherapy or inserting intravenous lines, should encourage the patient to ask questions. Some doctors fall back too readily on answering questions with scientific jargon or statistics without giving context. Statistics are invaluable—it’s impossible to practice medicine without them—but patients who suffer rare complications take little comfort in the statement, “it happens less than 1 percent of the time.”
   The team approach to breast cancer is a key reason for the improved survival statistics. But even a team approach sometimes has its drawbacks, including poor communication or unnecessarily duplicated tests. Also, a negative or counterproductive attitude by a single person on the team can undo the good work of 10 others. It is imperative every caregiver demonstrates patience and tolerance and does what they can to instill the patient with courage. Most importantly, a major part of every caregiver’s role is to be an advocate for the patient.

What People Can Do For Themselves
   Early detection is the sine qua non of breast cancer treatment. Patients diagnosed early tend to have better survival and cure rates. While there is some give-and-take about the value of regular self-breast examinations, this is indisputably how many patients detect their own cancer. An experienced physician or nurse should educate women on the proper technique and timing of self-examination. Along with self-exam, women should learn the signs and symptoms of breast cancer. Besides lumps, skin changes, unusual breast thickening, nipple discharge and breast pain can all persist for a long time before the patient brings them to the doctor’s attention.
   Mammography (imaging) is the cornerstone of early detection, an essential aspect of contemporary public health. Unfortunately, in many parts of the country, mammography services are shrinking. There are fewer imaging machines and fewer doctors to interpret them because mammography is a frequent source of litigation and not always a high-profit area. (Sadly, some in the insurance and medical industry have lost their way in pursuit of profit at the expense of the patient.) The good news is, despite some controversy, there is strong consensus that screening through imaging saves lives. Moreover, better and more sophisticated imaging techniques are being developed that will only enhance detection. Be an advocate for more screening mammography programs through your job or place of worship.
     Another emerging area of research and treatment where women can take an active role is in the genetics of breast cancer. Women in certain high-risk categories and those with a strong family history of breast cancer are candidates for genetic profiling. In certain cases, the genetic profile suggests the best approach is prophylactic mastectomy. This is an area women should discuss with their doctors to see whether they are candidates for risk assessment and genetic evaluation.
   In terms of prevention, much remains to be learned. There are indications that moderate exercise, avoiding obesity and minimizing alcohol intake may all play a role in lowering the risk of breast cancer.

What You Can Do For Family, Friends or Acquaintances with Breast Cancer
   Become part of their support system in any way possible.  Don’t avoid them or rationalize “it’s better if I don’t say anything.” In fact, small gestures like a phone call, a card or a pleasant remark mean a lot to the patient. After surgery, tests and chemotherapy, volunteer to transport the patient to and from the hospital, help with carpooling and caring for kids after school and providing meals for them and their family. Chemotherapy may only take a few hours, but between travel and the medication side effects, it’s usually an all-day event. Patients need help. Coworkers and bosses can be of assistance in adjusting patients’ workloads and providing flexibility with work schedules.

Heroes and Gratitude

   A word on heroes: While not all patients are candidates for breast cancer studies, a debt of gratitude is owed to those who have participated in studies for most of our advances in the
field. They are true unsung heroes of medicine. Demonstrate your gratitude by donating in some way, either money or time, to a breast cancer-related charity.
   As devastating as a diagnosis of breast cancer can be, it offers a new perspective on life; it is not all sadness. Patients, family and friends can have many good moments during the course of the disease. Often, they tell jokes together and experience a spirit of togetherness they might otherwise not have known. Resist any urge to blame yourself for the disease. Remember, some things that happen cannot be prevented (the two most important breast cancer risk factors, age and family history, are both immutable). With the current progress in research and treatment, there is every reason to believe the prognosis for all patients will continue to improve. Finally, keep in mind the things that are truly important—your health and that of your family and friends.

Published: October 11, 2008
Issue: November 2008 Investing In Chicago