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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.
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