Ideal Mother

Full of Life

When an expectant mother learns she has breast cancer, she faces a wrenching decision.

By Laura Yorke

Shocking News

You hear all the time about mothers who put their lives on the line for their children. Women who stand up to danger or search tirelessly for a cure. Women who endure pain or hardship of their own, who won't take no for an answer. All for the children they hold in their arms every night.

This is the story of one of those women -- brave, strong and determined. Only the child she fought for was still just a promise. And in a twist many people would call a miracle, the unborn child ended up saving her life. This is the story of Michelle DeSantis and Michael, the son who almost wasn't.

The winter of 2002 was a magical time for Michelle. She and her husband, Jim, a stockbroker, had just purchased their dream house, a five-bedroom Colonial on an acre of land in a quiet town on Long Island. After struggling with developmental delays, their six-year-old, James, had started regular kindergarten. And now Michelle thought she might be expecting again. Out to dinner one Friday with her best girlfriends, toward the end of the evening she confided that she'd missed her period a couple of weeks before. Everyone knew how much Michelle wanted another baby, and none of them could stand the suspense. So she and her friends drove around, looking for a late-night convenience store. They bought a home pregnancy test kit and -- bingo! -- it was positive.

Busy with James and getting ready for the move, Michelle did not immediately visit her ob-gyn. She finally made an appointment through her sister Marie, the administrative secretary to her doctor, Adam Romoff. Routine blood work confirmed Michelle's pregnancy at nine weeks. Dr. Romoff also gave Michelle a breast exam. Feeling something in one of her breasts, he ordered a sonogram, standard procedure for a pregnant woman with a suspect lump. Michelle stuck the prescription Dr. Romoff had written in her purse without looking at it. A week later, as she handed it to the radiology receptionist, she noticed it ordered an ultrasound of her right breast -- yet she thought she remembered Dr. Romoff saying he felt something on her left. She called Marie, who conferred with the doctor. "Have them both checked," he said.

The radiologist thought he saw something in the right breast, in addition to the left. Michelle was thinking, "Okay, I have two cysts. Big deal." More than anything, she was preoccupied with getting home to James. Dr. Romoff, in whom she had total faith, could take care of the rest.

Indeed, breast cancer isn't common in women in their early 30s. Yet within the hour, Dr. Romoff received a phone call from the radiologist. Marie knew her sister had just been for her sonogram. And she knew such a quick response could not mean good news. "I ran into his office when he got off the phone, and he looked up and said, 'Marie, you have to give me a minute.' He was in shock." The radiologist had found a suspicious cluster of cells in the right breast. Dr. Romoff called Michelle, breaking the news as gently as he could. She needed a biopsy within the week.

A doctor did biopsies on both sides -- one a fine-needle aspiration, the other a core biopsy. Tissue from the right breast went immediately to the pathology lab. The needle was big and the emotional tension exhausting, but Jim and Michelle weren't alarmed. "Jim, I am not cooking dinner tonight," Michelle said, joking.

The MD came back into the exam room: They needed another biopsy. He tried to be reassuring, telling them that one to three biopsies are usually performed on suspicious tissue. Jim was starting to get concerned, and began firing questions. The answers were always the same: "We won't know until we get there." Jim left the room for a few minutes. While he was out, the doctor came back. "We have to do another one," he told Michelle.

The third set of results seemed to take an unbearable amount of time. "I couldn't be on that table any longer. I just wanted to get dressed and get out of there," Michelle recalls. The doctor came back once more. "We see malignant cells."

"The first thing I said was, 'I want my mother.' Here I am, 34 years old, pregnant. How does this happen?" With the exception of a cousin on her mother's side, no one in the family had ever been diagnosed with breast cancer. Dr. Romoff immediately got the pathologist's findings, and Michelle went straight to his office. She was finding it hard to get control of herself. She believed -- for the first time -- that she was going to die. But the sensation was surreal, detached. "It was less 'I am going to die' than like hearing someone dear to you was dying."

Dr. Romoff and Marie were waiting, and Jim was there, too, of course, but Michelle felt utterly isolated, frozen in anxiety. She heard Dr. Romoff trying to explain that there were different types of cancers, with different risk factors and treatments. But by then her mind had shut off. She remembers thinking, "I am going to die. I want to be with my son, and I don't know how to tell my parents I have cancer."

When she got home and saw James, Michelle became inconsolable. "What if I'm not here anymore for him?" When James was a toddler, Michelle took charge of his developmental therapy herself, which had only deepened their bond. James wanted a baby brother or sister, and asked for one constantly. After the home pregnancy test, Michelle and Jim had told him to pray every night and ask God if he could put a baby in Mommy's belly. Once the pregnancy had been confirmed, she and Jim told James. "He was so thrilled -- he believed God had directly answered his prayers," she says. And now what would happen?

Two days later, Michelle and Jim went for an appointment with Dr. Leslie Montgomery at Memorial Sloan-Kettering Cancer Center in New York City. She reviewed Michelle's file before giving her an exam. She knew the lump was at 12 o'clock in the right breast, but she couldn't feel it. Dr. Romoff could not have felt it. No one could have. Only the sonogram -- that was necessitated by the pregnancy -- picked it up. A fluke, or a small miracle.

A Mother's Choice

In her office, Dr. Montgomery drew a diagram of the breast with an arrow pointing to it and the word lumpectomy written above it. She doled out options -- "lumpectomy then radiation," "mastectomy," "chemo." Michelle was listening to them all, but what she really heard was "cancer." Her thoughts ran from the crucial to the mundane: "I am going to die." Then, "hair is a big deal in our family" -- they all have beautiful, dark Italian hair -- "I don't want chemo. I don't want my hair to fall out!" Even after Dr. Montgomery had explained everything, Michelle could not completely grasp the magnitude of what had happened to her, or of what she needed to decide. The one thing that stuck was that there would be no grace period.

One option: termination of the pregnancy, followed by a lumpectomy, and radiation. "What have other women done when they were diagnosed with cancer while pregnant?" Michelle asked.

"Terminated," said Montgomery. Today, she adds a caveat. "Each case is unique. Each patient's risk/benefit ratio is different." In weighing the decision to keep a pregnancy, the woman needs to take into account the doctor's experience in treating similar cancers, and the doctor needs to take into account the woman's desires and hopes. Michelle knew exactly what hers were.

At a second meeting, Dr. Montgomery knew a bit more. Michelle's tumor was classified as estrogen receptor positive. Generally that's a plus, because it opens the door to a wider range of treatments. But when a woman is pregnant, this kind of tumor feeds off the increased estrogen in her bloodstream, possibly making it grow rapidly.

But there was also good news. The tumor was well differentiated. Because it was also small -- under one centimeter -- Michelle didn't need chemo. The biggest question at this point was whether any lymph nodes had been affected. That would determine Michelle's treatment -- either aggressive, or less so. But the only way to find out was to test tissue samples from her lymph nodes. There are two procedures for this; neither one was a great option for a pregnant woman. All the signs pointed in just one direction: Michelle should terminate her pregnancy.

Once they were out of Dr. Montgomery's office, though, Michelle suddenly wasn't so sure. "It doesn't make sense to me now," she said to Jim and Marie. "I can't imagine why I have to terminate when we don't know if it's in my lymph nodes. And this little baby saved my life. If I wasn't pregnant, I would not have had the breast exam. We would not have caught the cancer so early. So how can I just let go?"

At that point, Jim and Marie became nearly apoplectic. Of course she had to terminate. On the drive home, Michelle called Dr. Romoff. "Pregnant women have surgeries. What difference does it make if it's a tonsillectomy, a lumpectomy or a mastectomy? Fetuses survive surgery." She asked him point-blank, "Do you think I have to terminate?"

"Absolutely not," he answered.

Today he says, "There is no evidence that pregnancy affects the prognosis of breast cancer from stage to stage. Early breast cancer in women who are not pregnant has been shown to have the same outcome as early breast cancer in women who are pregnant." The risk was in the limitations to treatment that the pregnancy posed. If Michelle wanted to take the gamble, Dr. Romoff was willing to stand by her.

As Michelle recalls now, "Marie was having a canary, and Jim was furious." They couldn't understand her stubbornness -- why expose herself to such a risk?

For Michelle, there was a consideration beyond just the baby she was carrying. If she terminated, her oncologist recommended that she be put on tamoxifen, a standard drug for patients with estrogen-fed tumors. And most women take tamoxifen for five years; while taking it, they shouldn't get pregnant. By the time she finished her treatment, Michelle would be almost 40. Even if she did get pregnant, by the time the baby was born, James would be 11 and Jim in his 50s.

As she looked at all her options, Michelle's way became clear. Forget the lumpectomy -- she should just have her right breast removed. She wouldn't need radiation or chemo. A mastectomy meant she could nurse before starting tamoxifen. And during her mastectomy, they could examine her lymph nodes. "If it's in the lymph nodes, we'll cross that bridge when we come to it," she said. "If I terminate and my lymph nodes turn out to be clear, I will have lost my baby. Under that scenario, I could never live with myself -- what if I couldn't get pregnant again?"

Talking on the telephone with Dr. Romoff later, Michelle was adamant. "Who cares about my breast? It can be fixed. It won't be perfect, but it can be fixed. I just want the cancer out of me." Fortunately, she says today, "we were on the same page."

Says Dr. Romoff: "Michelle made it easy for me to help her because she let me know, clearly, what her priorities were. She wanted the cancer out. She was far less concerned about cosmetics. She did not want radiation. I thoroughly supported her decision -- and do to this day."

The night before the surgery, Michelle told James, "Mommy has a little cyst on her chest and she needs to have it removed." He could relate to the explanation because he'd had a little cyst on his chest removed. He did not ask many questions. At five o'clock the next morning, Jim and Michelle drove into New York City for the surgery. Whisked into a gown and the waiting room, Michelle found herself talking to a woman in her 60s.

"Is this your first time?" the woman asked. Michelle wasn't sure which "first" she meant, but she answered. "Yes. Is it yours?"

"My third. I've had two lumpectomies, and they didn't work out, so now I have to have a mastectomy."

Michelle looked up and silently whispered, "Thank you, God." She felt it was a sign that she was meant to take the aggressive option. Seconds later, the nurse called out, "Michelle DeSantis!" It was time to go.

Two hours later, Michelle was in the recovery room. Dazed, she distantly heard Marie talking to Jim. "She looks good! Her color is good. Her hair even looks good!" The recovery nurse asked Michelle if she would like to see her husband. "I was lying there, and I saw Jim charging toward me. He got to my bed, and he just grabbed my hand and dropped to his knees and started crying hysterically. 'It's all right, Jim. I feel really good,' I told him. And I did -- all that wonderful, positive energy of the pregnancy was starting to take over."

Dr. Romoff was there, too, with the fetal monitor, ready to listen for a heartbeat. He didn't hear it right away, even though Michelle was 13 weeks pregnant. Everyone was still. Then, there it was. Five days later, Michelle took a call from Dr. Montgomery.

"Your lymph nodes are clean," she said. Michelle burst into tears. The emotional relief was overwhelming. "It was a big turning point for us. We knew after that, we could really look forward to the baby."

It struck Michelle how blessed she was to have listened to her gut and taken the more radical approach. "I just kept thinking, Thank you, God. Thank you for guiding me. The real gift was being able to take the information I had at the time -- to know what was best for me." The final blessing came on November 22, when Michael was born, whole and healthy.

Nearly three years later, Michelle, Jim and their sons are living in the magic they craved so much. After breast-feeding, Michelle started tamoxifen, which made her ill and depressed. Her breast reconstruction has been long, and at times painful. She knows, though, that these will soon just be memories, mostly obscured by the everyday joys of her sons. "Yesterday, we were at a friend's house, and James and the other boy went upstairs. Michael kept saying, 'Where's my brother? Where's my James? Where's my James?' When James came back, Michael said, 'James! My brother!' and hugged him. Then he rested his head on James's shoulder." Her voice trails off.

Sitting in the sun on her patio, waiting for James's school bus, with Michael sleeping soundly just inside the door, Michelle DeSantis knows exactly what she might have missed, and exactly what she has.