The Breast Cancer Book: What You Need to Know to Make Informed Decisions

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Are you terrified by the notion that you might have breast cancer? For most women, fear of breast cancer is greater than fear of heart disease, colon cancer, and other cancers. Why this is so is unclear. But women in other Western countries are as frightened of breast cancer as American women. Is it the loss of a breast? Perhaps. In Western countries, breasts are important to a woman's body image. Certainly, fear of breast cancer is greater in developed countries than in developing nations. Western clothing styles can cover up a colostomy. They can even conceal the fact that we have heart disease. But try hiding breasts.

Whether you have been diagnosed with breast cancer or are facing that possibility, do not panic. It may be hard to believe, but you have time. Learn as much about your case as you can before you make a decision about your treatment (Box 1).

Yes, breast cancer is a serious problem and the incidence has been rising. In the United States breast cancer vies with lung cancer as the leading cancer cause of death among women. In recent years lung cancer has won the race (the grim price women have paid for the acceptance of cigarette smoking). First or second, breast cancer is a leading problem for American women. In 2003 there were approximately 211,300 new cases of invasive breast cancer plus about 55,700 new cases of noninvasive breast cancer. You undoubtedly worry that you may become one of these statistics-if you aren't already.

Here's another statistic, one you may already know. Currently, the lifetime incidence of breast cancer is considered to be one woman in seven. Do you know what this means? If seven 40-year-old women are sitting in a room, do you believe that one of them has (or has had) breast cancer? If you believe that, you are wrong. What one in seven means is that if seven women live to their expected 80+ years, one of them will be diagnosed with breast cancer during the course of her lifetime. So if seven 94-year-old women are sitting together in a room, one of them will probably have had a diagnosis of breast cancer. One in seven, like other statistics, has a different significance depending on its context-which, in this instance, is age.

In 1980 the lifetime incidence of breast cancer was regarded to be one woman in eleven. Has a breast cancer epidemic developed in the last twenty-five years? Or does the lifetime incidence of breast cancer appear to be increasing because American women are living longer? The latter undoubtedly comes closer to the truth, although there are many other contributing factors-among them improved mammography, which can diagnose noninvasive and invasive breast cancers even before a lump in the breast is found.

These numbers certainly indicate the magnitude of the breast cancer problem. Now for some numbers that show why you have time to make decisions. How long do you think it takes for one breast cancer cell to divide into two, two into four, four into eight, and so on? Twenty minutes? Twenty-four hours? A few days? A few months? Most people answer twenty minutes or twenty-four hours or even a few days. The correct answer is actually on the order of three months.

A small, pea-sized cancer (one cubic centimeter, the size easily seen on mammograms) is composed of approximately a billion cells. Mathematicians have calculated that it takes thirty doublings to make one billion (that is, to go from one cell to two, to four, to eight, eventually to one billion). You do the arithmetic. Multiply thirty doublings by three months (the time it takes one breast cancer cell to double into two) and you get the astounding number of ninety months, or approximately eight years!

What does this mean for you? It means that if you find a small lump in your breast that turns out to be cancer-even invasive cancer -and if you are postmenopausal (older than 50 years), that cancer has been around for a very long time.

What if you are premenopausal? You, too, have time. The dramatic, heartrending scenes in old movies and novels in which a woman with a breast lump is whisked off to the operating room not knowing whether she will emerge with one breast or two-those scenes are gone forever (Box 2).

If you are diagnosed to have breast cancer, two teams will be involved in your care: (1) the diagnostic team, which consists of a radiologist/mammographer, a surgeon (preferably a breast surgeon), and a pathologist; and (2) the treatment team, which comprises a breast surgeon, a radiation oncologist (a specialist who treats cancer with radiation), and a medical oncologist (a specialist who treats cancer with drugs).

When your life is in so many other people's hands, you may feel overwhelmed and passively accept whatever is said to you. Or you may be so confused by the multitude of recommendations that you go into a frenzy and are unable to think straight. You need to keep your wits about you.

Hurried, rash decisions, or decisions made for you by others and accepted by default, will have an impact on the rest of your life. If you get nothing else from this book, know that you should take the time to explore your options, discuss them thoroughly, and make the right decision for you. Your decision may not be right (or convenient) for your advisors. But it is yours to make, not theirs.

Well-meaning loved ones and friends may find it easy to give you advice, often based on their own experiences or those of others. Just remember, the final decision maker is you, the patient-not your physician, not your husband, not your mother or close family members or friends. Get their input if you wish; it may be important or it may be simply another old wives' tale. But in the final analysis, you are the decision maker. You-not your loved ones or your friends-have to go to bed each night and wake up with the results of your decision.

A decision between two equal alternatives is a gut decision. It is not necessarily the decision others would make. It has to be right for you, the individual woman. It has to feel right.

When I counsel a woman who can't make up her mind between two equal alternatives, I often tell her to go to bed one night thinking that she will undergo one of the two treatments, and the next night go to bed persuaded she will have the other. Then she should ask herself on which day she woke up feeling better.

The other side of taking time to decide is that while you do have time, you don't have all the time in the world. Many women, when first told they have breast cancer, don't want this life-changing event to alter the course of their lives. They say, "But I have so much to do ..." They are frightened. They think adhering to their usual schedule may make the threat go away. A woman who is frightened of having breast cancer-perhaps because she has had an abnormal mammogram, or because she has felt a new lump in her breast-may try to allay her fears by keeping busy taking care of her children, her husband, her career. Women fall easily into this trap, because they have learned the habit of "taking care of."

It's time now to take care of yourself.

If, instead of addressing the problem, you get busy, you are not taking care of yourself, you are not taking hold-you are not in control. These circumstances can lead to unfortunate decisions.

Being in control means saying no to other demands. You need to tell others, "I come first, because if I don't, there won't be anything left of me to take care of you." Your children, your husband, your other loved ones cannot know your dread, cannot understand what you are going through when you worry that you have breast cancer. It's up to you to face your problem and make it your first priority. Start by talking to your primary care physician. You're going to have many questions. You need to ask them, and get answers that satisfy you. Don't settle for less.

Yes, I know that in these days of managed care your physician may seem not to have time to answer questions. In fact, your doctor may cringe when he or she sees your list. You may have to make back-to-back appointments to give you enough time for all your questions plus your examination.

Here are some of the questions you may want to ask your doctor if you haven't been diagnosed to have breast cancer.

I have a lump in my breast that you too can feel. I'm scared. You have referred me for additional studies. When will you tell me about the results? If you can't give me the results, who will?

You have recommended certain tests. Who has responsibility for giving me the results? When is the earliest that I will know the result of each test you have ordered? Is it possible to get a copy of my test results? If so, will your o;ce send them to me promptly?

I have a strong family history of breast cancer. Do I need to be checked more frequently than the average person?

I feel a breast lump. You don't. What should I do? Do I need a mammogram?

If both you and I feel the same lump in my breast, what do I do about my birth control pills, my hormone replacement therapy, my diet?

Here are some questions you may have if you've been diagnosed with breast cancer.

What stage am I in? How long will I live? Shall I tell my family?

Are we certain of the diagnosis? Who is the pathologist who made the diagnosis? What is his or her track record? Do I need a second opinion?

How will my treatment be decided? What will it be? Must I have surgery? Will I need either chemotherapy or radiation, or both? When?

Are several treatment teams available? Why did you select this particular team? What is the background of each physician on the team? May I meet each one separately? If I'm not comfortable with a physician on the team, may I choose a replacement?

If I phone you and you are seeing your routine patients, how soon will you return my phone call-if it is urgent? if it is routine?

Since I have breast cancer, should my sisters and my female children be checked? How? When?

Are there support groups that I should join? That my family should meet?

What can I do to help myself? It's very important that I have some control over this illness. Should I eat differently? Should I exercise more?

You are recommending conventional treatments. Will my insurance cover them?

What alternative or complementary treatments are available? Is one form of treatment mutually exclusive of another? Will my insurance pay for them?

Check with your insurance agent about coverage for tests and treatments.

It is very important to get information about your particular medical system: your hospital, other facilities that may be available, the competence of your diagnosing and treating physicians, second opinions, and so on. You may want to ask your doctor about these issues, or you may want to check other sources. How capable is the radiology department that will be responsible for your mammograms? The pathology department that is responsible for processing and diagnosing your tissue? How competent are the cancer doctors taking care of you? What about the hospital? Is there a cancer nurse coordinator, a social worker, or some other person who can assist you in scheduling tests and with hospitalization-in other words, help you through the system? If you live in a big city, you may have more choices than if you live in a small town.

Set a date for making a decision. Two to four weeks is usually about right. Use the time wisely. And good luck!

Remember ...

The pea-sized lump found in your breast or the small density seen in your mammogram probably has been there, undetected, for a very long time. If it is breast cancer, it is not dividing every few minutes or hours or even days. Don't let fear paralyze you-see your physician.

If you are diagnosed with breast cancer, you have time. Use it wisely. Get as much information as you can about your particular breast cancer before you make decisions relating to how it is to be treated.

When you've received a diagnosis of cancer, no question is too trivial. All questions should be answered promptly.

If you are postmenopausal, the doubling time for breast cancer generally is on the order of three months. If you are premenopausal, the doubling time may be shorter than that, but you still have time to make decisions based on fact, not fear.

Set yourself a time limit for decision making. Two to four weeks after the date of your diagnosis is appropriate.

Be in control of your life. Learn how to handle your breast cancer in the way that suits you best.

You, and only you, are the final decision maker.

Chapter Two
Detection: Mammograms and Breast Exams

This long chapter has two separate decision trees, Decision Trees 1 and 2. Because of its size, Decision Tree 1 is divided into Decision Tree 1a and Decision Tree 1b. Decision Tree 1a is the path to follow if you have a new breast lump or abnormality. Decision Tree 1b is the path to follow if you haven't. Almost everyone should follow Decision Tree 1b. Essentially, it is a component of breast cancer screening that should be a regular part of your life. Since Decision Tree 1a requires immediate action, we'll start with that.

You may have been examining your breasts since you were in your teens. You know how they normally look and feel. Your doctor probably examines your breasts every year and, depending on your age, you may be getting yearly screening mammograms.

Now there's a lump in your breast that you hadn't noticed before. You discovered it yourself, or your partner did. You have been frantic with anxiety ever since.

Perhaps you're at your doctor's office when the discovery is made. Your doctor finds a lump during your annual checkup, or the mammographer sees an unusual area in your routine screening mammogram.

What should you do now? Look at Decision Tree 1a. There are a lot of options. Don't be intimidated; get mobilized, not just because you need to find out if you have breast cancer, but because the combination of uncertainty and inaction will really unsettle you.

If you haven't already seen your primary physician, do so as soon as possible. He or she can confirm a lump by a clinical breast exam (CBE). Your doctor may not feel a lump even though you do, or even though your mammogram was suspicious. We'll deal with those scenarios later. For now, let's say your doctor confirms the lump you feel. If you are premenopausal, you will be asked to come back within one week of the completion of your next menstrual cycle to ensure that the lump is not a cyst. A painful lump is usually, but not always, a cyst. If you are postmenopausal, you should be sent directly to a surgeon for a biopsy and probably for a mammogram.

Let's say that in a month, or within a week of completion of your next menstrual cycle, neither your self-exam nor your primary physician's exam detects the lump. If you are younger than 35, you may be referred for a diagnostic ultrasound, which can detect cysts and doesn't subject a young woman with radiosensitive breast tissue to radiation.

If you are 35 years old or older, you will be referred for a diagnostic mammogram of both breasts. (The lumpless breast may give information as well.) You will also be sent for a diagnostic mammogram if you had a positive or suspicious screening mammogram but no palpable lump, or if you can feel a lump that your doctor cannot.

If the diagnostic mammogram is positive-that is, it shows a lesion in the breast that had the lump or other abnormality-another diagnostic mammogram and CBE will be performed just to confirm the previous findings. The mammogram could show a lesion that neither you nor your doctor can feel. Or a lump that had gone away could come back, without the diagnostic mammogram's showing any abnormality in the area of the lump. When physical exams and mammograms are at odds, only a biopsy can resolve the issue.

What if the diagnostic mammogram is negative, and neither you nor your doctor can feel or see the lump or abnormality any longer? Is the coast clear? Not quite. As Decision Tree 2 shows, in three months you should (1) repeat the diagnostic mammogram, (2) repeat the CBE, and (3) repeat any other studies, such as breast ultrasound exams.

And then you can resume regular screening for breast cancer.

What if the abnormality doesn't go away after being confirmed by your primary physician's CBE? You too may be referred for a diagnostic mammogram. The bottom line, as in the preceding scenarios, is that you will be sent to have the lesion biopsied. (You'll read about biopsies in Chapter 3.)

(Continues...)

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Excerpted from The Breast Cancer Book by Ruth H. Grobstein Copyright © 2005 by Ruth H. Grobstein. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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