The Breast Cancer Care Book: A Survival Guide for Patients and Loved Ones

Chapter One

Twenty-five-year-old Tonya had experienced her share of transitions. In a little over a year she had married and was now seven months pregnant. As a nurse in an obstetrician's office, she previously had experienced the joy of a new life coming into the world with countless women. Now at last it was her turn. As she felt the baby move and kick, her mind raced ahead to the drastic changes her life would undergo in just two more months when her baby boy made his appearance. Then one day Tonya brushed across her breast and stopped a moment. Did she notice something new, a lump? Not a lump, really, Tonya assured herself. It's more like a clogged milk duct. At her next appointment with her obstetrician, she told him about it.

Next thing she knew, she was on her way to see a radiologist for an ultrasound. After imaging the area, the radiologist studied the results for what seemed to Tonya like hours.

Finally he said, "You know, I just don't believe this is malignant."

Well, that's good, Tonya thought. I never dreamed it really might be.

Tonya's obstetrician wanted her to see a surgeon, who recommended a mammogram followed by a biopsy.

Tonya was from a small town about eighty miles from the large city where her surgery was to be done. Since the biopsy was early in the morning, her parents took a second car so Tonya and her mom could shop for baby items when the procedure was over. Her husband and her dad would head back home. Tonya and her mom would have plenty of time after the procedure to make an event of the trip, so Tonya made a mental list of the stores she didn't want to miss.

During the biopsy, Tonya joked and talked with her surgeon. Then somebody came into the surgical suite and all conversation ended.

Tonya was puzzled when she was placed in a private alcove in the recovery room. Most patients were in a larger area with just curtains separating the beds. They probably want to check the baby, she surmised. Her family joined her along with her surgeon. She noticed tears in her surgeon's eyes. And then the unimaginable happened. The surgeon used the words "BREAST CANCER."

As a physician who has had to say those words to many women, I know that the first time any woman hears them, the world stops for a moment. Nobody is prepared to hear the report, even if a family member or close friend has had cancer, even if you suspected before the biopsy, even if . There is a world of difference between thinking I might have cancer and having that fear confirmed.

First Responses

I've found that, most of the time, patients hear little else of whatever the physician says at that time. You are numb, shocked, flooded with questions for which you want immediate answers. These are normal responses. Often women say their first thought is, I'm going to die. Fortunately, that isn't true. Most will recover. But the fear of death and the intrusion of a dreaded enemy eclipse everything else at that moment.

Tonya, now recovered and healthy, says, "I remember little about that time. I recall the room, and my husband, John, holding my hand. My mother held my forehead. I remember thinking, Oh, my God, how is this possible? My surgeon told me, 'You're going home today, and I would like to see you back tomorrow. Bring all of your questions, and we'll talk about what we need to do.' I thought that was good and bad-bad because I wanted to know right then, but good because it gave me a chance to gain some perspective."

Have you, too, felt the frightening impact of the words, "You have breast cancer"? Did you feel your life had taken a jarring turn in a dreadful direction?

Cancer is a rude travel companion, bringing with it several suitcases stuffed to overflowing with stress enhancers and expecting you to carry the luggage! It demands to have its own way and has no concern for the itinerary you had created for yourself. It doesn't care that your family has needs, that you're trying to hold down a job or advance your career, that its presence strains your relationships with those closest to you. It's indifferent to the physical, emotional, and spiritual havoc it wreaks. It sets its own schedule and pays no attention to your pleas to stop for a break.

As breast cancer's unwilling travel companion, do you feel you've lost control of all that's important to you? Do you struggle between focusing on the myriad of questions to which you want answers and concentrating on the flood of emotions you're experiencing? If so, your response is normal, I assure you.

Many women have journeyed this way before you-you are not alone. In reality you are in the company of hundreds of thousands of resilient women.

As a surgeon who specializes in breast cancer, I have had the privilege of caring for many of these women. Over my nearly twenty years in this role, I have developed tremendous respect for the women who have faced this terrifying disrupter of their lives. They have shown themselves to be women of strength, fortitude, courage, and humor. Not that they didn't feel afraid, weary, and overwhelmed many times, but my respect came as I saw them move forward through the journey, regardless of what life asked them to face.

The book you hold in your hand is designed with you in mind. Together we will explore your questions, your emotions, and-be sure to catch this next step-your options. Yes, you do have options. I plan to lay out a map for you to follow on your journey so you can look ahead to the upcoming "destinations" and find spiritual turnouts that can provide you with respite. Along the way I'll explain new terms as well as potential twists and turns. This is a book about how to care for yourself, how to trust God's care, and how to lean on the care of loved ones as you journey through breast cancer. It is a book about receiving the care you need during this time.

Facing the Emotions

Have you noticed that the rush of questions and emotions seems overwhelming? Most women in your circumstances have said the same thing. So let's start there, as we clear some of the fog that may be clouding your vision. Then we will follow with a discussion of your options.

The following responses to the pronouncement of breast cancer are typical.

Sandy, 58, found that she could say, "It is a cancer" or "It is a diagnosis of cancer." What she avoided saying was, "I have cancer." She didn't want to feel like it was hers or a part of her. She wonders if it will be easier to say, "I had cancer."

Karen, 59, suspected something was wrong when she noticed a periodic twinge of pain in her right breast. "One night, as I was getting into bed, I thought, I need to go into the bathroom and look at my breast. I had never paid much attention to my body. And I never looked at myself in the mirror, despite the whole bathroom being covered in mirrors. But when I felt my breast, I could feel two lumps under the nipple, and the nipple was dimpled. I had ignored some signals I should have listened to. I immediately pulled out my medical encyclopedia and realized I probably had breast cancer.

"I took it to the Lord right away. I remember saying to him, 'I know there is nothing more I can do except seek medical counsel as soon as possible.' I asked him to take away the tumors, but I also told him that if he didn't, then I knew he had a higher purpose, and that I was willing to submit to his will."

A mammogram the next day confirmed Karen's fears.

Karen felt she had ignored the signs of a problem and had to deal with guilt. "I had to just confess it and ask God to forgive me. There wasn't anything I could do about it now. I also knew that I wouldn't have been able to prevent cancer. I just might have found it sooner."

With God's help, Karen changed the guilt into conviction. Guilt lays like a heavy weight on our shoulders, and it brings no benefit with it. Conviction allows us to acknowledge a poor choice and to make a change.

The Big "Why"

Discovery of breast cancer evokes questions about why, when, and how it happened. These thoughts and the feelings that accompany them are normal. In a culture steeped with cause-and-effect relationships, the patient and family often seek to find a culprit or something to blame to help make sense of all this. Was it the stress in her life? Perhaps it was the estrogen she was taking in menopause. Maybe it was her diet. She knows it was too high in fat and deficient in fruits and vegetables.

Women who eat right, exercise right, and do everything right still get breast cancer. (For more about risk factors, see Appendix A.) More is being learned every day about injuries to the cell's DNA, the "command center" of a cell that starts the problem. Damage to this command center causes the cell to do things it's not supposed to do, such as dividing uncontrollably. But while we understand more of what happens to an individual cell to make it go bad, no one can predict when or to whom this will happen on an individual basis. Risk factors by themselves cannot explain it. Most women diagnosed with breast cancer have no known risk factors.

Sandy's breast cancer was found when her doctor felt a lump during her annual physical. "On my doctor's desk was my normal mammogram report from the previous week," Sandy said. This made his finding all the more surprising. As her doctor explained, mammograms and physical examination of the breasts are complementary, detecting different things. Each procedure, by itself, can miss things the other technique can detect. The two together give greater accuracy. In Sandy's case, her breast tissue was dense, which meant there was little contrast between the normal breast tissue and the cancer on the mammogram. But because she followed through with an examination by her physician, the cancer was detected.

Moving Forward

Women look back and scour the last year or six months for what they or someone else could have done differently to detect their cancer. While that's a normal response to a cancer diagnosis, it wastes emotional energy on something that cannot be changed. That energy is needed for the battle ahead. The best tactic is to move on and focus on winning the battle.

That is what Tonya did. Because she's from a small community, the word had spread by the time she and her family arrived home. And the word everyone received was, "It's cancer, and we hear it's bad."

Several friends had gathered at her parents' home. After offering expressions of concern, the men drifted off to find comfort in work. Eventually the women went their way as well. Tonya and her mom were left to talk. They considered the worst things that could happen: What if the baby didn't make it? What if the baby had a problem? What if the cancer was worse than they had imagined? They turned each negative over in their minds as if they were examining a complex puzzle. (The baby was born early but healthy.) Facing the fear decreased the power of the fear. You're likely to find the same is true for you, too.

Putting the cancer out on the table also allowed them to take it to God. "I think that helped us to gain perspective," Tonya said. "And it allowed us to rely on our faith as we moved forward."

God is not an intruder. Instead, he waits for us to turn to him with our hurts and questions. As we acknowledge to him our fear, anger, and doubt, we invite his response. And he never fails to respond. Even if we don't understand the answers to all our questions, God steps in. As trust grows we see, in time, that he truly has our best interests in mind and that he moves in our lives with love, kindness, and wisdom beyond our comprehension.

Tonya sat down and wrote out every question that occurred to her-and she had a lot of questions. That in itself was therapeutic.

Customized Coping

Identifying questions and facing your emotions are the healthiest ways to begin the journey through breast cancer. Beyond just the physical challenge, family dynamics change and emotions ride a roller coaster. You can experience a deep healing, both physically and emotionally, or give in to unhealthy patterns that become entrenched if those responses are pursued.

After learning she had breast cancer, Jody, 45, set about putting her house in order, literally. "I planned to work hard on the house and try to get the kids' photo albums and other projects completed as well as see family and friends. There's a lot I can do to prepare. I really shouldn't think of my life as being on hold as I have been since the diagnosis."

Coping patterns are as individual as the women themselves. The amount and type of information a woman wants and needs are different. Some immediately search for all possible information. They collect books, contact organizations, search the Internet, and talk to friends. Others want only the essential information immediately and prefer to seek out more details later-or never. Both are very legitimate ways of coping.

There is no one-size-fits-all mold. Ask yourself what has been helpful to you in the past. When facing challenges, do you find that a stack of books and information empower you or overwhelm you? Does being surrounded by people energize you or drain you?

You can be more resourceful than you may realize. Your spiritual background and coping skills will help you. After all, you have faced crises before. Draw strength from those spiritual and emotional sources that you've already cultivated. Recognize that each family member may take a different path to healing, and give room to those differences.

Sheila talked with her priest after she learned she had breast cancer. She asked for prayer, but she didn't tell anyone else. She didn't even tell her two grown sons right away. Then she told her youngest, who was living at home. For Sheila, waiting to tell others helped her to sort through her own feelings and emotions and to feel more in control. Eventually she did tell her church family, which provided overwhelming love and support. She found particularly thoughtful a woman who offered a spontaneous prayer for Sheila's healing.

Sharon, 40, found out about the cancer on Monday, but she didn't cry until Tuesday night. When her family was told about the diagnosis, "panic ensued." That's how she describes it. She felt she couldn't fall apart because she needed to be strong for her kids. Waiting until Wednesday to discuss it in depth with her surgeon was almost unbearably difficult for Sharon.

Lola, 62, kept her focus on the Lord. "Before I knew the results of the biopsy," she recalls, "I sat behind two friends of mine in church. One had lupus and the other rheumatoid arthritis. That put my situation in perspective for me."

Continues.