Portal de Periódicos da CAPES

Becoming a Daughter

2006; Wiley; Volume: 15; Issue: 3 Linguagem: Inglês

10.1007/s10897-005-9012-5

1573-3599

Ellen Matloff,

Global Cancer Incidence and Screening

It was just another Wednesday morning. I was sitting in my tiny basement office with a stack of patient charts to my right, a folder opened to the pedigree on my left as I chipped away at summary letters on my outdated computer. My colleague was seeing patients at one of our outreach clinics, the phones were relatively quiet, and I anticipated a quiet and productive day. Suddenly, I realized I hadn't received my daily e-mail from my mother and had the urge to call her. She picked up the phone on the first ring and I asked how she was and where she'd been that morning. She said, “My annual mammogram was this morning, remember?” “Oh yes, was it good?” A short silence, and then I revised, “Well, not good, of course, I'm sure its never fun, but did it go okay?” Another short silence and then my heart skipped a beat. “Well honey, not really. The radiologist found something.” A short shocked silence, and then the bargaining began. “Found something? Like a small calcification? Perhaps a small DCIS?,” I negotiated with my physician mother, trying to keep any hint of panic from my voice. A measured pause, “Actually honey, she feels that there is an invasive component. They performed a biopsy and we will have the path tomorrow.” I don't remember what I said next, but I hoped it sounded calm and reassuring. I told her I loved her and hung up the phone. Three minutes later and my mother had breast cancer. I sat at my desk in quiet shock and reviewed the data in my head at an astonishing pace. This can't be true. My mother had no significant family history of breast or ovarian cancer, was not of Jewish ancestry—I had been more concerned with cardiac disease someday. Someday far from today. This can't be true. I glanced down at the chart I had been working on and the pedigree jumped out at me. The consultant was a 38-year-old woman whose mother was diagnosed with breast cancer in her forties. The upper right hand quadrant of her mother's pedigree circle was colored in, as is our standard for breast cancer. This shading now seemed so crude, insensitive. Grotesque. How have I never noticed this before? A bold consultant arrow pointed to the patient, one of so many women concerned because she is the daughter of a mother with breast cancer. The thought crossed my consciousness, I'm becoming a daughter. I stood up quickly and clipped down the hall on my high heels, more nervous energy than I could contain. I broke out the door to the street and onto the busy sidewalk to the crisp fall day. I was struck by the way, people were carrying on conversations, walking to lunch, behaving as though this were just an ordinary day. On 9/11 everyone looked shaken and panicked, as expected. Today I was alone in my panic, adrift in a sea of normalcy. Thoughts swam through my mind. If the radiologist was willing to say that this finding looked like an invasive breast cancer, she must be certain. I walked around the block and sat near a busy pedestrian pathway watching the people drift by. Not knowing what to do with myself, I finally returned to my office and busied myself writing patient letters and returning phone calls. A thirst for the familiar. The phone rang and it was my younger sister sounding scared. She made the mistake of innocently saying, “I guess we just have to pray that it isn't cancer.” I exploded, “If the radiologist says its cancer Sarah, its cancer, okay? We need to pray that its small, estrogen receptor positive, and that her lymph nodes are negative, okay?” Okay Ellen, you have officially lost it. We received the pathology report the next day and there were no surprises. My mother made the decision to have a unilateral mastectomy without reconstruction and the surgery was scheduled for less than a week away. I always thought a week was a short time to wait for surgery… oh, how blissfully foolish I'd been. I tortured myself with hours of medline searches looking for a clue, a hint, a lifeline. Her tumor was 1.3 cm by imaging, her axillary exam negative, what is the chance that her sentinel nodes will be negative? What is the average estrogen receptor status in a 64-year-old woman? And what is the relationship to mortality? Questions lapped through my mind, churning, consuming me. I found myself in clinic counseling a fifty-something woman whose elderly mother was dying of endometrial cancer. “I know that she is almost eighty and has lived a long and happy life, but I still can't bear the thought of losing my mom.” A wave of emotion lapped across the room in my direction. Ellen, you can't start crying. Get yourself together, you're the counselor here. Your mother is not going to die. You don't even know if her nodes are involved, and if they are she can have chemotherapy… Stop. I have just missed the next two sentences my patient said. Oh my god, I'm not paying attention. This poor patient, her mother is dying and I'm not even listening to her. I am a terrible counselor and a selfish person. I need to pull myself together, I'm losing it. Three more sentences lost. I drifted through the next few days in a fog, calculating every possible tumor profile, nodal outcome and researching the most appropriate therapy for each. I stayed after work each night and sifted through hundreds of medline entries, looking for answers to questions I hadn't even thought of yet. On Tuesday morning my mother went in for her mastectomy. She specifically requested that my sister and I not travel home. It would be easier for her to go through this with my father, alone. My sister suggested that we buck her suggestion and show up at the hospital, but I sensed that this request was in earnest and we should respect it. Tuesday finally arrived. I sat in Grand Rounds that morning picturing my mother with an IV in her arm, a tube down her throat, and the vulnerability of her small body lying on an operating room table. I pictured a scapel cutting away her breast, blood, stitches, a scar. Exactly how had I been so nonchalant when discussing the procedure with patients a thousand times before? Why had I thought I was an empathetic counselor who was really listening to patients describing their family members’ experience with cancer? I hadn't understood a damn thing. I left Grand Rounds having heard not a word the speaker spoke and headed back to my office with my colleague, who was beside herself trying to comfort me silently. A small plant from her waited on my desk with a note that read, “I hope your mom is okay.” I cried, hard, for a few minutes before pulling it back together and calling my dad. My father was sitting in the physician's lounge in the hospital waiting for his surgical colleague to come down from the operating room with news about my mom's sentinel nodes. The physician's lounge–a familiar place of safety, where he was used to being the one in charge. Sitting out in the waiting room represented too much vulnerability, a loss of control. “Hi dad, how are you?” “I'm okay sweetie, just waiting.” We wasted time discussing trivial matters, who they had seen in the grocery store the day before, a friend who brought donuts and coffee to him while he was waiting. I felt guilty for not being there. And then after a few minutes the sound of a door opening, “Hold on honey, Peter is here.” Muffled conversation, more intense and then more conversational, a door closing. “Her lymph nodes are negative honey.” A wave of relief crashed over my body. Thank you God, thank you. I was then struck by the thought of all of my patients who hadn't been so lucky, whose mothers had been diagnosed with more advanced tumors, who had been younger than my 32 years when they went through this hell. I felt grateful, guilty for being grateful, and then grateful again. My mother spent only one night in the hospital, as she wished, and was making dinner and baking the next day. Outsiders might have questioned this activity, but those of us who love her knew that this was what she wanted—normalcy. I asked if I could read her pathology reports and my father chimed in that he thought this was a bad idea. My mother faxed them anyway. I remember sitting next to our office fax machine and watching those documents come across, one line at a time. How surreal to see my mother's name at the top of the fax—perhaps this was a bad idea. And then I read the report. Two sentinel nodes, negative for invasive ductal carcinoma. Estrogen and progesterone receptors, strongly positive, favorable. HER-2, strongly overexpressing, unfavorable. I hadn't prayed for her HER-2 status. HER-2 was a relatively new tumor marker and wasn't widely used in clinical decision-making. I was used to seeing overexpression in the context of an estrogen receptor negative tumor–what did it mean with an ER/PR positive tumor? This is an unusual tumor profile—what does this mean? My mother was scheduled to see the local oncologist within the next week. What would the next step be? Chemotherapy? Tamoxifen? I saw women in clinic who were losing their hair and hiding it with scarves and hats. I thought of my mom. I spent my days seeing patients, calling my oncologist friends with this pathology information, and doing medline searches. Cancer was everywhere. One oncologist said, “This is an unusual tumor profile. I believe only 10% of all breast cancers have this phenotype … in fact, I may have just heard that tamoxifen doesn't work in these patients? I'm not sure.” That small comment launched a major search. I tracked down an oncologist colleague with a research interest in HER-2 who confirmed that early studies suggested that some drugs called aromatase inhibitors were significantly more effective than tamoxifen in these tumors. The data were sparse, but fairly convincing (Ellis et al., 2001). I pulled every article written on the topic and identified the researcher in California most experienced on the topic. I e-mailed him, called him and finally tracked him down. The early data were unconfirmed in human studies, but all pointed in the same direction—my mother should not take tamoxifen. Within days I learned that cutting edge data had just been presented at the San Antonio Breast Conference on the superiority of aromatase inhibitors to tamoxifen. I sent a message to the Cancer SIG listserv for a copy of the abstract and was rewarded with a grainy fax from a colleague within a few hours (Baum et al., 2001). It looked like this drug was not only safe in humans, but preferable. From the data I'd read, highly preferable in tumors that were ER+ and overexpressed HER-2. My mother met with her oncologist and, as was the standard, he wrote her a prescription for tamoxifen. I asked her to wait to fill it until I could get home a few days later. I sat down with my parents at the kitchen table and reviewed all of the data. We agreed that we should speak to my mother's oncologist. I called him first thing the next morning. Hours passed. The afternoon passed. I called back and his secretary said he was very busy. Wow, I'm on the other side. I sat down and typed a clinic-style letter to the oncologist, attached copies of the relevant articles, with the main points highlighted, and hand delivered it to his office. He called the next day and spoke to my mother—he reluctantly agreed that we should try an aromatase inhibitor. Over the next months and years the data on this tumor profile emerged. The lines on the bar graph between tamoxifen and aromatase inhibitors for this tumor subtype diverged further and further apart (Lipton et al., 2002). Not only did tamoxifen fail in these patients, some data suggested that it accelerated tumor growth (Osborne et al., 2003). I came so close to missing this. Within minutes, seconds of missing this–dangerously close. What would have happened? Have I missed this type of information for my own patients? What mistakes have I made? I would find myself sitting at a conference at which I was a speaker, Grand Rounds as an observer, tumor board in the role of a cancer genetic counselor, but drifting into the role of manic daughter/researcher as I dissected the information and applied it to my mother's case. While taking a pedigree I found myself comparing the prognostic factors of a patient with breast cancer to those of my own mother—her factors are worse than my mother's and she is alive ten years later. The family histories I took had deeper meaning to me. The stories of daughters losing mothers, at any age, felt different. Almost four years have passed since my mother's diagnosis. She is alive and well, although the side effects of the aromatase inhibitor have had an impact on her quality of life. Her movements are arthritic, her hot flashes apparent. She never complains but I can see that this medication has taken its toll. I often wonder if we made the right decision with this medication; of course, we will likely never know. For the most part, my own anxiety about her, her health, her treatment has dissipated. I don't think about it every day anymore, and I hope that she doesn't either. I have since counseled hundreds of women whose mothers, fathers, siblings, or grandparents have been diagnosed with breast cancer. Often, I have had a fleeting urge to share with them that I've been through the same thing. To express that I truly understand the waiting, the fear that takes your breath away. But, of course, that is not our relationship, not our work together. And then the urge passes and I am back in the role of the genetic counselor. My own scars are hidden neatly beneath my title and I am once again the source of information, the source of support, the counselor. It's safer here anyway. Has my own mother's diagnosis of breast cancer impacted my practice of cancer genetic counseling? Absolutely. As has been described by other colleagues, a personal experience can reframe your counseling, your career and your perspective (Veach et al., 2002). I no longer see this as a positive change or a negative change—it is simply my pedigree. The week my mother was diagnosed, I stumbled through life in a foggy mixture of shock and fear. Looking back, I could have taken sick time to allow myself to process what we were going through; however, if I had to do it again, I would likely choose the same course. Canceling out my week and taking sick time would have been an admission—to myself and my colleagues—that there was a major crisis. I wasn't ready for this admission and can't imagine what I would have done with myself if I had had endless time to think about, research, and obsess over the diagnosis. Work represented a good diversion, an anchor of normalcy, and a marker that the world had not completely collapsed. I have since watched several colleagues deal with personal crises, both large and small, and have noted that some cling to their normal schedules while others take a leave and immerse themselves. It is dependent on the situation and the individual. At the beginning, the most difficult moments involved direct patient interactions, eliciting pedigrees, and discussing cancer diagnoses. I often thought to myself that I wouldn't be faced with these red hot pokers if I worked as a high school teacher or as a contract attorney; however, I also would not have had access to information, knowledge and professional resources, and I believe that the trade-off was in my favor. During the first few weeks I took a lot of deep breaths, cried in the bathroom in between cases, and talked often to my colleagues and friends by phone. As is most often the case, these moments became easier with time and callouses. Every once in a while a certain patient or story will still reach down deep and draw out those feelings; but, for the most part, I've learned to compartmentalize. I remember feeling very guilty for not being 100% present for sessions with those patients I saw during this raw period of time. I wonder how many patients noticed my red eyes and doubted my excuse about allergies; how many noticed that I drifted off for segments of their stories and had to repeat my questions; how many patients felt that I wasn't entirely emotionally present during our sessions. Looking back, the answer is probably very few. Most of these patients were meeting me for only the first or second time, and were likely immersed in their own anxiety, sadness, fear and family memories. My work as a supervisor over the past few years has shown me that often we, as providers, are too hard on ourselves. It has been my impression that if a patient senses the counselor is competent and caring, small transgressions are overlooked. Reflection on this event over the past few years has reminded me that we too are only human. Our physicians, teachers, pilots, therapists, and friends all have their own lives. If you catch them during a crisis, you will likely receive a different standard of care. Not because they don't care, are incompetent, or insensitive—but because we are all human. The survivor guilt has been harder to shake. The pedigrees in which young children lose parents to cancer when they are thirty, twenty, ten, five—these stories are hard to accept, to integrate. I think of what my life would be like if I had lost my mother four years ago, or if I lost her now. Many patients who have lost their mothers at young ages appear blissfully unaware of the magnitude of their loss because they don't miss what they've never had. I am grateful for their ignorance. I also realize that I am transferring my own experience of my mother onto them, when perhaps they didn't share the same relationship. That, somehow, seems even sadder. I think of my mother's oncologist and the prescription he wrote for tamoxifen. If she had taken tamoxifen, perhaps her outcome would be equally as good. Perhaps she would have had fewer adverse symptoms, although the data don't support either of these hypotheses. He was doing his job and recommending the medication that was clearly the standard of care at the time. I wonder how many times I have made a recommendation that was the clear standard of care that resulted in the wrong choice for the patient. This fear hovers over me when I review patient letters, recommendations, and test results. I've accepted that science and medicine are evolving fields. What we tell patients today will likely be outdated in five years, or maybe even in five weeks or five minutes. We do the best we can with the information we have today, and we forgive ourselves for not being able to predict the future. Opinions about sharing personal experiences with patients certainly differ between caregivers. For me, it is easier and less complicated to keep my experiences to myself. I once counseled a patient who reported infertility problems with a geneticist who himself had had problems conceiving. He shared his problem with the patient and she asked him several questions about his experience, including if he had a low sperm count. It was difficult for him to set boundaries on the topic once he had opened the door. I am sure that my admission that my mother had breast cancer would lead patients to ask if I'd had genetic testing, why or why not, what I would do with the information, and all of the questions that would follow logically. Would I explain to a patient that our family history did not warrant testing? That my mother would have had testing if it had? Does one question simply lead to a million others? It is not so much this slippery slope I fear, but that the patient will feel she has to ask me appropriate and polite questions about my mother and take care of me during the session. Much like a therapy session, I want the counseling experience to be about her and her family, only. My approach most certainly has strengths and limitations. Perhaps the most drastic change this experience has had on my counseling is my departure from non-directiveness. When a patient admits that she has not had a recommended mammogram, colonoscopy or prophylactic oophorectomy, I am far from non-directive. If anything, my approach leans toward hard-core tough love. One BRCA1+ patient recounted at a support group meeting that when she was 48-years old I called her over a 12-month period of time until she finally had a prophylactic oophorectomy, at which time she was diagnosed with an early-stage ovarian cancer. Although my intentions are good, I realize that my instincts have the potential to be militant if not kept in check. My colleagues and I discuss these cases and the feelings behind them at our weekly counseling meeting, and I am grateful for this checkpoint. Looking back over this experience, I would advise colleagues going through similar experiences to remember to take care of yourself, first. This may mean discussing the impact of your personal situation on your counseling at case conferences, privately with a colleague, and/or on your own with a therapist. It may mean taking some time off, avoiding certain types of cases for a few months, or requesting supervision to ensure that your counseling response is appropriate. These feelings certainly deserve attention and thought. And so, four years later, I have learned that I am still learning every day. I've learned that my personal experiences will shape my counseling style, my career, and my interactions with patients and colleagues. I've also learned that this is okay. This manuscript is dedicated to my mother, Martha Steadman Matloff, and to the other daughters and mothers in my own practice. This manuscript was published with the written consent of the author's mother.