Raffaella: Breast Cancer Survivor
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Raffaella Zanuttini’s busy life as a Professor of Linguistics at Yale, as a wife, and as a mother of two boys, 12 and 15, does not leave her much spare time. So when her February mammogram showed more calcifications lined up in a suspicious pattern and the nurses at the Breast Center at Smilow Cancer Hospital recommended she have a biopsy, she was not ready to act.
“I told them that I was too busy,” said Raffaella. “I was going to Zurich to present a paper at a conference, and I didn’t want to give that up. To tell the truth, I was also dragging my feet. The nurses kindly but firmly told me that it was essential to have the biopsy, and that I could leave that same night for my conference.” This marked the beginning of their relationship: a helpful and productive dialogue that involved compassionate and competent nurses, doctors, therapists and members of the staff.
When Raffaella returned from Europe, she got the news that she had ductal carcinoma in situ (DCIS). She made an appointment with Dr. Anees Chagpar, Director of the Breast Center at Smilow Cancer Hospital.
“She found a time slot to see me that same week, as soon as we were both available, on Friday afternoon. She and her nurse, Jeanie, sat with me and my husband for over two hours, past the time when everyone was leaving for the weekend. She explained to us what DCIS is, and what our options were: I could choose a full mastectomy followed by reconstructive surgery; or I could have a partial mastectomy, just removing the area in question, followed by radiation therapy.”
When a woman has invasive breast cancer, the tumor presents as a lump, which is removed. However, in DCIS, the cells seen on a mammogram, are small white flecks. If they present in certain patterns, such as tight clusters with irregular shapes, they can be precancerous cells. There is no tool that can tell the surgeon how much DCIS is present before surgery. And the surgeon cannot see it or feel it during surgery. Only when the tissue is examined under the microscope after surgery, can it be determined whether or not there are clean margins, that is, whether there are still cancer cells around the area.
“When she saw that I was leaning toward a partial mastectomy, Dr. Chagpar was very careful to explain the risks involved. She informed me that there was a risk we might not remove enough tissue the first time. She warned me that if the pathology report came back saying the margins were not clean, she would have to go in again for a second surgery. She made it very clear that a percentage of patients have to have additional surgery. But I’m an optimist and so I chose the partial mastectomy, which I had on March 7. It was Spring Break at Yale, and that would give me some time to have the surgery and recover.”
“Ten days after the surgery my husband and I met again with Dr. Chagpar. She told us the margins were not clean. The treatment options were the same as before: full mastectomy or partial mastectomy. I chose the partial mastectomy again, hoping it’d yield the desired result this time around. And again, Dr. Chagpar accommodated my schedule. I had the second surgery on April 5, so that I could rest over Easter weekend. Unfortunately, I was again unlucky, one of the eight percent of patients who does not get clean margins after the second surgery.”
“This time, I was stunned. I didn’t expect this result. But Dr. Chagpar helped me think things through, calmly and patiently. I was confused and full of doubts as to whether I had chosen the right strategy, and what to do next. Dr. Chagpar asked me ‘How would you feel if we go ahead and do the full mastectomy, and find out that it wasn’t really necessary?’ I said I would feel stupid. ‘How would you feel, on the other hand,’ Dr. Chagpar said, ‘if we did a third partial mastectomy and then found out that we needed do a full mastectomy?’ I said I would feel unlucky. This was a clear indication, she thought, that I wasn’t quite ready yet for a full mastectomy. We opted for the third partial mastectomy, knowing that it might not be the end of the story.”
But when Raffaella went home and talked to some of her friends, she started to have doubts again. Her instinct had been to do the lesser surgery, the one that required less time in the hospital and less time recovering. But was that the right decision? She was confused. Was she looking at the situation the right way, doing only the surgery that was strictly necessary?
“My husband was incredibly supportive,” said Raffaella, “but his instincts were different from mine. He’s the kind of person that wouldn’t hesitate to go through with a test or treatment, if a doctor recommended it. Instead I tend to wonder, is it really necessary? Do we need to do all this? Now I was confused, and needed to be convinced before I went ahead with the next step.”
“I decided to get a second opinion from Dr. Nina Horowitz. She met my husband and me at lunchtime, a few days before the already scheduled third surgery. She spent over an hour with us. Like the other doctors and nurses we have met at Smilow, she was not only incredibly kind but also well prepared. She had looked at all my records and knew what had happened. She helped me take a step back and understand what was driving my choices: I chose the partial mastectomy because I was looking for something that didn’t disrupt my life or my kids’ lives.”
“She said although that was a fine strategy, I should also think about the long term. With a partial mastectomy I could be somewhat disfigured. The more surgery is done, the more the shape of your breast changes. I realized that I had thought about the choices medically and practically, but never aesthetically. After that appointment, I felt two things. First Dr. Horowitz confirmed that what Dr. Chagpar was doing was right, and that I wasn’t crazy making the decision I did. But I also needed to think more broadly about the future.“
After that conversation, Raffaella and her husband were not quite ready to go ahead with the scheduled surgery, and wanted to discuss the decision with Dr. Chagpar once more. Again, she made time for them: she met them and went over the situation, their choices and their options. After a long conversation, they decided to go ahead with the scheduled third surgery, now feeling sure that this was the decision that best fit Raffaella’s needs and desires. The surgery went well and ten days later the pathology report produced good news – clean margins. She was now done with the surgical part of the treatment, and ready to start with radiation.Raffaella was able to start her 30 radiation treatments at the end of May. She and her husband had previously met with Dr. Joanne Weidhaas, Raffaella’s radiation oncologist, who had explained to them why this was a necessary step and what it would entail. “Like Dr. Chagpar, Dr. Weidhaas was kind and patient, generous with her time, very clear in her explanations and very willing to answer our many questions. She was also able to reassure me that this treatment would not disrupt my life or the life of my children. She met with me once a week, every Monday, and always had reassuring words, which convinced me that everything would be fine.”
And things did indeed go well. The staff and therapists at the Department of Radiation Oncology at Smilow accommodated her schedule. They scheduled her radiation treatment for 8:00 a.m. every morning, so that she could be out by 8:20 or 8:30 at the latest. Raffaella was organizing a workshop at Yale at the end of May, and at first she didn’t want to start treatment until after the workshop. But Dr. Weidhaas reassured her that she could do both, and she was right: Raffaella was done with radiation every morning by 8:30 at the latest, and could easily be at her workshop before 9:00, when it started.
“What has impressed me about this whole experience,” explains Raffaella, “is how understanding everybody has been, how concerned they are about the patients and their needs. I had not heard of ‘patient-centered care’ before. But now I really know what it means. Everyone tries to understand where you are coming from, what is important to you. They encourage you to choose a treatment that fits in with your priorities. My priority was not to do more surgery than necessary, and not stay in the hospital one minute more than I had to, for personal and professional reasons. They helped me do that. They scheduled my appointments first thing in the morning, even for the surgeries, so that I could be home waiting for the kids when they came back from school.
And when we were surprised, confused and overwhelmed, trying to absorb unexpected news, people took the time to explain things to us, to answer our questions. They really went out of their way to make my life easier. And it’s the attitude of the whole team … not just the doctors. Everyone tries to accommodate you. They go way beyond what they have to do."“I also learned things I never knew about myself. I really like my life. I knew how much I liked my family life, of course, with my husband and kids. But what I didn’t realize was that I really love my work life, too. I care about my classes and students. I wanted to be able to see them graduate, in May. I did not know that having cancer would make me appreciate what I have more than I did before.”