Special Reports

Breast cancer — two words you never want to hear

I was sobbing, shivering in a pink paper vest that opened in the front. The doctor's assistant had told me to take off my blouse and bra and put the vest on.

The assistant was nice and did her best to console me, saying it was OK to cry: "It's fine. Everyone does it. Everyone is scared."

She took my vital signs - I think - and walked out. I watched my tears splash onto the floor. Reality was setting in. I was terrified.

I have breast cancer.

It's getting easier to say but it still doesn't seem real. Sometimes I have to keep repeating it just to remind myself.

I looked around the room. A rubber replica of a woman's breast lay on the countertop by the sink. Was that how mine would end up -- hacked off?

Maybe I would die. Maybe they'd have to mutilate me to save me.

I had to go to work right after this, and my mascara was running.

Get yourself together, Tracy.

The cancer diagnosis was only 3 days old. It was so unexpected. But who anticipates cancer?

I was 41. No family history of breast cancer. Healthy. A vegetarian for two decades. I'd slimmed down on Weight Watchers and exercised regularly.

I was doing everything right.

How could I have cancer?

It's probably the same question hundreds of thousands of women ask themselves each year. I was starting a journey that, with early detection and medical advances, many more of us are living to tell about.

This is my story.

The start of something

I never worried about mammograms much. Not like my mother. She's always convinced doctors will find cancer. I tell her to quit worrying and just do it. "I just did mine and it was fine," I'd say.

That was before I got a call-back notice in the mail and a telephone call the same day. "The radiologist wants to look at your left breast again," said the voice on the answering machine. I managed to calm myself and call back.

I went for a second mammogram May 30, sure they would tell me everything was fine. Instead, the radiologist asked to see me -- first sign of trouble.

I knew the radiologist was Dr. Bonna Rogers-Neufeld. I had interviewed her by telephone for stories -- including one about mammogram screening -- but had never met her in person. Maybe she recognized my name and just wanted to meet me.

Boy, was I wrong.

When I walked back to see her, she called me a muckraker -- she had recognized my name -- and we made polite conversation. Then she went quiet, put her hand on my knee and looked straight into my eyes. She said there was a suspicious cluster "that could be the start of something," a tiny spot on the grainy film image hanging on the light board.

I felt queasy. My eyes began to water, then I muttered, "Cancer?" She said, "Well, we don't know."

At least she was honest.

Next day, I came in for a biopsy, still terrified. I had requested that Rogers-Neufeld do it -- she's a top radiologist in the area, specializing in breast cancer. Actually, I pleaded with her to do it.

I had a stereotactic core needle biopsy -- long name for big needle, plucking out tissue from breast. It hurt.

Afterward I trimmed off the top edges of surgical tape over my chest. The tape was sticking out from my shirt, and I didn't want my teenage daughters to notice. I had decided not to tell the girls anything until I knew for sure.

The results were expected the following day, a Friday, but took longer. I worried the whole weekend about the possibility of cancer swimming around inside me.

Monday, June 4. Rogers-Neufeld called my cell phone just after lunch to give me the news. I had "ductal carcinoma in situ." Cancer.

I was at work and I felt sick. They had to be wrong. I never even had a lump. How could this be happening?

Rogers-Neufeld began explaining DCIS. I don't think I heard much after "cancer." Then she told me to pull myself together, go into reporter mode and educate myself.

I was in tears when I told my editor: "I just found out I have breast cancer. I need to leave."

The next few hours were a blur. I was pulling up to my boyfriend's house when Rogers-Neufeld called my cell phone to talk to me about choosing a surgeon. She gave me some recommendations -- all women.

It was all so fast. Cancer, surgery, and surely death.

"Is this treatable?" I sobbed, afraid to ask the real question: Was I dying?

Rogers-Neufeld said, "This is not only treatable, it's totally fixable."

I wrote her words on the back of my reporter's note pad and recited them over and over. It felt better to think I was just temporarily broken and could be fixed.

But in the back of my mind I kept thinking about how women die from breast cancer. Would I be one of them?

My boyfriend's mother had died of cancer. Nearly speechless, Rick mostly hugged me while I cried on his shoulder.

Next I drove to my mom's. We cried together and she said it should have been her instead of me. "You're too young," she said. "You have young children." She said she was mad at God. I told her not to be mad at God because "we still need him."

I had to pull myself together because I had to go home and tell my two daughters. It was the hardest thing I've ever had to do. I'm a single mom and I knew they'd be afraid I would die. They'd only known one person who had cancer, my friend Denise, and she died.

I had printed out information on DCIS, but they were too stunned to read it. We cried together. I promised we would get through this and that I wasn't dying because they caught it early.

In the back of my mind I also worried I may have passed down some defective gene to them that could give them breast cancer too, and I felt guilty.

I made myself go to work the next day. It would do no good to sit home and think about cancer.

But cancer invaded my mind nearly nonstop.

I was going cancer crazy.

At home, I watched TV, but there was no escape. At night, I worried that if I slept on my left side, I'd squash the cancer and make the cells spread out and multiply.

Cancer crazy

I was obsessed. I read entire books on cancer in a weekend. I had a cancer folder two inches thick with facts and studies. I learned breast cancer can progress through five stages -- 0 to IV -- with IV the most serious. Mine was 0.

I also found DCIS patients have about a 98% to 99% chance of survival. One Web site declared that if you are going to have breast cancer, DCIS is the best one to get.

I read that DCIS is sometimes considered a pre-cancer. I was confused. Did I have cancer or not? Then I read it is definitely a cancer, it just hasn't yet figured out how to spread from the milk ducts, where it originates. It's noninvasive, or confined, hence the name "in situ" -- meaning in the same place.

My cancer wasn't very smart. Maybe I was lucky after all.

I read that breast cancer affects one in about seven women, most with no family history.

It affects white women more, followed by black women, then Hispanic and Asian women. I am part Hispanic and part Asian, so shouldn't I have been at extra low risk?

I would later ask the "Why me?" question of my oncologist. He said: "Why not you?" How rude, I thought. But he was right. I wasn't any more special than other women who got breast cancer.

But that was later. Before the oncologist was the surgery. And that started with me in the cold exam room, in the pink vest, seeing the breast on the counter. Waiting for the surgeon to tell me how she'd carve the cancer out and whether I could be saved. She and the cancer had all the power.

When Dr. Vassi Gardikas walked in, I was embarrassed. I'm a strong person, a tough reporter. And here I was a sobbing mess in a pink paper vest.

I write about health care, about her colleagues and her profession. I know some medical professionals don't care for me much. I hoped she hadn't heard of me. But she had.

She didn't seem to care. She saw only a terrified patient.

Gardikas tried to comfort me. She told me she knew what I was going through because she too had been diagnosed with breast cancer several years ago.

I tried my best to act surprised, but I already knew. I had checked her out. I got information from friends of friends -- some of them doctors -- who knew about her.

Gardikas had a reputation as a good surgeon, and having had breast cancer was another reason to choose her. If anyone could understand, she could.

Left breast, 3 o'clock

Afraid they would open me up and find a huge, black ball of cancer -- much bigger and worse than anyone predicted. So big they'd be forced to remove both breasts in surgery while I slept. "I would never have done that to you!" Gardikas said later when I told her.

I also feared they'd cut the wrong breast, even though nurses had marked me with a pen. The target: "Left breast, 3 o'clock," according to my pathology reports.

I came out of surgery thinking I should have felt much worse. It really wasn't that bad. I vaguely remember talking to Gardikas afterward and hugging her.

I went home a few hours later and watched TV. Recovery went swiftly and I returned to work Tuesday. I had a 2-inch-plus incision on the outside of my breast as my cancer reminder.

I had already told a few co-workers about the cancer, but talking about it was strange. Many looked at me with such pity and despair. I know they meant well, but it sometimes irritated me. "Don't look at me like I'm dying. I'm OK," I'd say. "They caught it early." I might have been trying to convince myself.

Some of the women asked about the lumpectomy. A few times, I puffed out my chest and replied, "I don't know. Do I look lopsided to you?" I wanted them to laugh with me, not feel sorry for me. I knew if I couldn't laugh, I would cry.

Sometimes I talked about it too much. (I read cancer patients can enter a realm of oversharing). It was easier to make peace with it that way.

On a good day, I could joke about it. I could play the cancer card. At dinner with friends, when we disagreed on an appetizer, I'd say: "Who has cancer? OK, I win."

Other times, I was overly sensitive, believing people should be extra kind to me. When I felt like my work was criticized or my children were acting out, I wanted to scream: "Screw you all. I have cancer!"

But I was feeling good. I didn't look like a cancer patient, and I certainly didn't feel like one.

The normalcy of life was returning. I was working. My daughters -- who were perfect angels for about three days after learning I had cancer -- returned to their usual fighting. They were busy with schoolwork and friends. I had laundry to do and meals to make.

The pathologist at Saint Agnes Medical Center, where I had my surgery, agreed with the DCIS diagnosis from the initial biopsy. This was good.

But my heart sank when my surgeon told me she wanted to cut me open again and take out a little more tissue because the margin of healthy tissue surrounding the cancer was only 1 millimeter on one side. She wanted to make sure she had gotten all of it out.

Gardikas also said the pre-surgery radiologist -- Dr. Judy Champaign -- was concerned about some additional specks on my mammogram. They could be harmless calcifications, but they'd need to be looked at. If it was more DCIS and she couldn't get to them in the second lumpectomy, she said, "We may be talking about another type of surgery."

It was the first time she talked about the M-word: Mastectomy.

Bad news

I typed questions the night before doctor appointments and left spaces to write in the answers.

Gardikas didn't seem to mind, although I worried I'd drive her crazy.

I got copies of my two pathology reports and studied them at home. I found several Web sites and books that deciphered the medical jargon and gave tips on more questions to ask doctors.

I learned you should find out whether your cancer is positive for estrogen and progesterone -- ER/PR. Doctors know that many breast cancers are fueled by these hormones, and lowering their levels with drugs can minimize the risk for recurrence.

Pathologists also grade cancer based on cell appearance -- how different they look and how quickly they divide. I learned I had an intermediate-grade cancer -- a Grade 2 on a scale of 1 to 3 (not to be confused with "stage"). The higher the grade, the more aggressive the cancer.

I asked my surgeon why none of the pathology reports identified my cancer's ER/PR status and whether we could request it. She thumbed through the two reports and said, "You're right."

It turned out to be a good thing I asked.

Gardikas called me back several days later with both good and bad news.

My cancer was ER/PR positive, and also negative for over-expression of HER2/neu (human epidermal growth factor receptor 2). All good.

HER2-positive breast cancers produce too much of the HER2 protein, causing the cells to grow and divide quickly, resulting in a more aggressive breast cancer. I didn't have to worry about this.

The bad news: The pathologist saw a tiny piece of invasive cancer, about 2.7 millimeters, in the tissue that had been removed in the lumpectomy. A millimeter is about the size of a pin head. It's tiny, she assured me.

I felt sick to my stomach and angry. I knew this could also change the course of my treatment.

"What? You are telling me I have invasive cancer when all along I was told I have non- invasive cancer?" Why wasn't it found in the two earlier pathology reads?

Gardikas tried to put it in perspective. The invasive cancer was out of me and in the tissue removed in the lumpectomy. "It's in the bottom of a bucket in a laboratory," she said.

Tissue can be sliced up thousands of ways as pathologists try to get the best sample to study. Gardikas told me it was a miracle the 2.7 mm piece of invasive cancer was even found.

I worried the invasive cancer -- capable of spreading -- had unleashed stray cancer cells throughout my body and I would die. What if something else had been missed? "I'm not sure I trust anything in the pathology report," I told Gardikas.

She asked whether I wanted a second opinion and suggested Stanford University Medical Center.

Stanford confirmed the local pathology findings. At least we all knew what we were dealing with.

My second surgery would now include a sentinel lymph node biopsy to make sure the cancer hadn't spread to the lymph nodes. Another incision, this time below my armpit.

With the invasive cancer and an amended pathology report, I automatically advanced from Stage 0 to Stage I.

If they found cancer in my lymph nodes -- where cancer typically first goes if it spreads from the breasts -- I could go to Stage II. One more step up the breast cancer ladder.

Where would it end?

Here we go again

A friend had bought me the book, "The Secret." It was hugely popular, but some people said it gave ailing people false hope. It was about the power of positive thinking. I figured I had nothing to lose and read the first few chapters.

I tried desperately to be positive as I headed into my surgery. The book talked about reciting positive mantras. "I will not have cancer. I will not have cancer," I said over and over to myself. "My cancer is gone. My cancer is gone."

I went into the hospital with full makeup -- mascara, eye shadow, lip gloss, the works, just like I did for the first surgery. It was bad enough they wouldn't let me wear my contact lenses and I had to wear my big, heavy glasses. I figured if I was going to meet my maker, I was going to look good. I also wanted to feel "normal" and anyone who knows me knows I don't go anywhere without my makeup.

My surgery team -- anesthesiologist, pre-surgery radiologist and surgeon -- were all women. So were all the nurses. The girl power was contagious.

I came out from the anesthesia quickly, this time with bandages covering two incisions -- one on my left breast, one under my armpit. Gardikas concluded that she could check those suspicious specks with the lumpectomy -- no mastectomy. The specks turned out to be nothing to worry about.

The next day, Gardikas called me at home and told me the pathologist didn't find cancer in the additional tissue and lymph nodes. We were both elated. I cried tears of joy.

Far from over

Chemo terrifies me. It can make you puke your guts out and lose your hair.

It's a lot harder to conceal cancer when you're on chemo. One day you're a healthy looking woman with thick, long dark hair, and the next day you're bald.

So far, I could choose who to tell about my breast cancer. Chemo could take this away from me. Everyone would see.

Dr. Christopher Perkins, my oncologist, said that because the invasive cancer was so small and hadn't spread, it could be treated with radiation for about six weeks, five days a week. I'd later go on tamoxifen, which lowers estrogen levels, to prevent a recurrence. Now that I've had cancer in one breast, I'm at greater risk of getting it in the other one. Tamoxifen minimizes the risk but has side effects, such as triggering early menopause.

I had always thought I might want another child. Even though I wasn't sure, I was angry that tamoxifen could steal this choice.

It was clear my cancer treatment was far from over. It would go on for five years -- the length of time Perkins wanted me on tamoxifen.

I wanted him to promise I'd be OK.

"You are not dying from this," he said. I wanted to ask him to swear on a stack of Bibles but didn't push it.

A week after seeing Perkins, I was at the office of a radiation oncologist, Dr. Li Liu.

The array of doctors has been mind-boggling. I feel like I've been felt up by nearly every doctor in town.

Liu explained every detail of the radiation with a nifty PowerPoint presentation on a laptop computer. Radiation beams aimed at precise spots would destroy any remaining cancer cells. It would be an extra precaution to ensure the cancer is wiped out.

There could be side effects -- sunburn and fatigue. There was a slight risk of damage to my heart with the radiation aimed at a target so close by. Scary, but it all seemed manageable.

Liu's assistant took pictures of my breasts for my records.

"How do I know this won't end up on the Internet?" I asked. She laughed.

I can see it now: "Breast cancer girls gone wild."

The longest 10 minutes

Liu's staff wanted to schedule my initial radiation markings on Aug. 27 -- my 42nd birthday. I pleaded: "Don't make me think about cancer on my birthday." We moved it to the next day.

Lying on the simulation machine, I felt like a human grid. Radiation therapists drew on me with a permanent marker, mapping out targets for radiation beams. They covered the six pen marks with clear tape so they wouldn't wash off in the shower.

I'd have the pen marks until my fifth treatment, when I would graduate to freckle-sized tattoos -- permanent, but less striking than the Flash Gordon lightning bolt across my breast, the cross in the middle of my cleavage and the "X" under my arm.

The staff was very kind, but I felt increasingly helpless. It was like changing your mind after you've been strapped in for a roller coaster ride. Only you can't.

I had my first radiation treatment Sept. 5. They tell you the radiation is relatively safe but it's hard to believe after they describe the room's walls -- 5 to 6 feet of cement, lined with lead -- and you see the entire staff bolt just before the machine comes on.

The machine sounds like a camera taking snapshots. It doesn't hurt, but the experience is foreign and lonely. When you're lying on the machine bed, alone with your cancer thoughts, 10 minutes feels like forever.

My emotions caught up with me at my fourth session. I'd had a particularly tough weekend. I had broken up with my boyfriend the day before -- cancer makes you do things like that as you take stock of your life and evaluate relationships. (We made up two weeks later.)

Tears began dripping down my face. I desperately wanted to wipe them off so the radiation therapist wouldn't see, but I had to lie still, gripping a bar over my head with both hands. When we were finally done, he looked at my face and handed me a tissue. He asked if I was in pain or it bothered me to have a male radiation therapist. "No, no," I said. "That's not it at all."

As I got dressed, I heard someone page a licensed clinical social worker over the intercom. "I hope that's not for me," I thought.

The social worker knocked on the dressing room door.

My face was flushed and my eyes were puffy. She told me to let myself cry, that it was perfectly normal. She also told me that I was focusing so much on how I would write my story that I wasn't dealing with my emotions. She was mostly right. I let myself have a good cry that morning.

The next session was better. Only one tear fell.

I finished radiation Oct. 19, but doctor appointments continue. I'll have mammograms every six months, and I'll start on tamoxifen soon.

I have to think that one day my fears will be eased and my cancer will be a distant memory.

But I also know with cancer, you can't get too comfortable. It can always come back.

I remember reading about Gilda Radner, how she thought she had licked ovarian cancer in the late 1980s. She even wrote a book about her life and how she had dealt with the disease. Then the cancer returned and killed her.

Without being too cocky, I'd like to think I've crushed my cancer for now.

But maybe a little fear is good.