Being a physician doesn’t get you good medical care. Being a shopper does.
A cautionary tale by Marcy Olmsted, M.D.
Photographs by Mary Ellen Mark
“Both cancer and motherhood are watersheds from which there is no turning back.”
When my baby was nine weeks old, I was diagnosed with breast cancer.
I had noticed the lump early in pregnancy, but as a family physician I knew the chance of this being cancer was very small. A corner of my brain also registered that if this were "bad" (something I am trained to think about in even the most normal circumstances), I would be counseled to terminate the pregnancy. I blocked out these thoughts; the life inside me had taken hold after two and a half years of infertility, and it felt like too great a miracle to consider ending it.
The post-holiday winter blues were setting in, but for once I didn't catch them. I was so elated to be pregnant-and we would soon be leaving for a tropical adventure. I was being flown by the U.S. Public Health Service to the Marshall Islands in the South Pacific to interview for a job. My husband would come along at our expense, and we would take a week's vacation in Hawaii. This would be topped off by a month of obstetrics (as part of my residency) in Los Angeles. I would be out of gray, cold New England for six weeks.
Less than a month before our departure, I felt a lump in my left breast, close to my armpit. It was a bit tender, which to me was proof that it was most likely just another of the lumps I had always found in my breasts, now made more evident by the hormonal stimulation of pregnancy. I went through the motions of trying to get it checked, but I couldn't get an appointment before I left. In retrospect I suppose I could have been more pushy, but actually I was relieved at not having to be faced with a possible dilemma. By the time we returned from our idyllic vacation, I had forgotten about the lump.
Marcy Olmsted at home in Providence, Rhode Island, with Melissa, now two.
My pregnancy was a relatively smooth one. I had the routine never-ending nausea and fatigue of the first trimester, intensified by my being on call for obstetrics every third night. But for once I could participate in deliveries without the anguished feeling that this might be something I'd never get to do.
The spring was glorious as I watched my waistline disappear and my abdomen expand. After seven years of medical training, I felt especially good to be ending the dreaded residency. Residents tend to feel superhuman, surrounded by their patients' crushing personal and family crises, yet feeling immune to them. Often they are visibly shaken when a seriously ill twenty or thirty year old shows up, because the safety net of distancing falls apart. A patient their age helps them understand that what is happening around them is real and painful and unfair.
But being on call is like being in a war zone-the intensity level is beyond what anyone outside the profession can imagine. Sleepless residents watch three shifts of nurses come and go while they themselves are caring for the critically ill and dying-it is as if the medical profession has fed its young and tender babes to the wolves. No wonder some doctors are cynical and compassionless after experiencing this horror.
A nagging suspicion grew throughout my residency that the medical system was not set up to meet the needs of patients. This was confirmed when I became a patient. As a resident I felt embarrassed whenever I spoke up about patients' feelings or experiences, as if I was distracting the group from the more important medical issues. More recently I have felt sad and guilty about all the times I didn't stand up for patients when they were helpless and needed an advocate. But I tell myself that as a resident I was a victim, too. Plus, I hadn't really been a patient. I didn't know what I do now.
Summer came, and we took a vacation to Cape Cod. We were happier than we had been in years. I lolled around the beach, frequently running my hands over my seven-months-pregnant abdomen. Back at our rented cottage I sometimes included my breasts in this satisfying personal survey. I couldn't linger long enough on my beautiful enormous self.
That's when I came across the lump again. I was surprised to find it still there. This time I obsessed about it, but in secret. I checked it several times a day, trying to make my fingers into those of a highly skilled blind clinician, able to diagnose only by touch, I went through the possibilities, from benign to serious and back again. I vowed I would have it checked immediately and then became the doctor and reassured myself. All of this I kept from my husband.
At my next midwife appointment, I got up the courage to point out the lump. "Feels like nothing," she said, "but have a doctor check it out." By the time I saw the general surgeon, I was less than two weeks from my due date, and she thought we should recheck the lump after my delivery. I made a follow-up appointment for one month postpartum. I was relieved that I had a surgeon who agreed with me that this was probably nothing.
After a fairly easy delivery, the first few weeks at home were a shock. My education had given me a better background than your average new mother, but I felt like I knew nothing. My day consisted of nursing, changing the baby, sitting in a sitz bath to soothe my episiotomy… Maybe I would have time for a short nap-but then I would be startled awake by a piercing cry. I had been used to sleeplessness, but never had I been on call twenty-four hours a day, seven days a week. It was completely exhausting.
Which isn't to say that it wasn't exhilarating as well. I would just sit and stare, amazed, at the tiny fingers and toes, the helpless arms flailing, the searching mouth latching onto whatever came close. She was like a creature from an underwater world who was just learning how to breathe and move in this new airy environment.
Slowly things started settling down. Melissa slept longer, she smiled; I became more self-assured. I still lived in the fog of sleep deprivation, but at least I got six-hour chunks. I was getting used to this baby being mine, and I was getting ready to move on to my new life. My job search had been successful, and I was soon to start as an emergency-room doctor in the tropical island of American Samoa.
Making the system work: Marcy Olmsted with husband Bill Gordon.
Against this background a bomb exploded in our lives. At my follow-up appointment the lump was smaller and the surgeon decided to do nothing. She then called back to say that because I was leaving the country, we might as well do a needle biopsy in her office and be sure. The results showed atypia (abnormal cells) and I needed the lump out as quickly as possible.
The lumpectomy was done several days later in an outpatient surgical suite. I received the results in the recovery room soon after the procedure. My surgeon handed me a note from a phone conversation with the pathologist. It said, "ductal carcinoma of the breast." We were stunned by the information and upset that the surgeon conveyed it in written form. She covered up her own discomfort by launching into a discussion of treatment options and long-term prognosis. I was overwhelmed with emotion and barely heard a word. I don't recall her saying she was sorry. All she did was briefly touch my hand.
That week was a whirlwind of doctors' appointments and decisions about treatment. Mastectomy, lumpectomy plus radiation, chemotherapy. Side effects, risks of treatment, risks of recurrence. Oncologists, radiation oncologists, plastic surgeons. They quoted statistics until we were dizzy with options, but they gave almost no opinions. The doctors kept saying it was up to me. No one understood that I wasn't a statistic, that this was my life and that these were awful decisions. I resented the fact that they could just go home to their lives, whereas I still had cancer.
My doctors gave me plenty of information but rarely took care of me. They knew how to cut into an anesthetized body, calculate radiation dosages and give statistics, but they weren't good at asking me how I was feeling. They barely acknowledged that I was a new mother and never mentioned what an absolutely overwhelming experience this must be. No one even gave me an affectionate pat, let alone a hug. Maybe they weren't trained to do this. Possibly they had been trained out of doing this. But what I needed doesn't really take training; it just takes being human.
I kept wondering if I was being treated differently because I was a doctor. Were my doctors skipping significant details because they assumed I already knew them? My surgeon rattled off the possible complications of lymph-node surgery in such medical jargon that my husband was left behind, and I felt embarrassed that I didn't remember the anatomical terms. I identified with my doctors too strongly and felt sorry for them for being so awkward. I bent over backward trying to understand why they weren't measuring up, and I kept thinking that maybe it was my fault.
Being a doctor helped me in some ways. I could grasp the basics quickly and not get mired in terminology. Generally I got more respect and faster appointments. Some of this comes with being an intelligent, confident person, but it helped that I knew the terrain of what is a foreign country to most new patients. Since my care wasn't that good, I found it scary to think about the care a less assertive or informed patient might receive. And then I remembered my residency and the lonely souls in whose cases mistakes had been made without their ever knowing, and I thought: something has to change.
My decisions were relatively easy at that point in my treatment. I didn't want a mastectomy (preferring the less-radical alternatives of lumpectomy and radiation), and the question of chemotherapy had to wait until I knew whether my lymph-nodes were involved. I wanted them explored as soon as possible. I had to know if I was dying now, or if I had more time.
It was ten days after my diagnosis and five days after lymph-node surgery that I was informed my nodes were, in fact, negative. These were some of the hardest days I have ever known. I was still nursing Melissa and she wasn't sleeping through the night. Once I remember sitting in my "nursing station" on the sofa at 5:00 A.M., sobbing uncontrollably. The first reds and purples of morning were just visible, and this precious and vulnerable creature was gently lapping my breast, now known to be cancerous. Life seemed so beautiful, so poignant and so fragile. I felt the black shadow with its scythe trailing me so vividly that I'm no longer sure it was just a poetic presence. Gradually the noise of cars and people in the outside world made my rational self take charge again. Having cancer and needing to find doctors and choose between treatments is a demanding as well as nerve-shattering job.
So it was decided. I would have six to seven weeks of daily radiation treatments, to start a week or so before Christmas. I could take a break and go to my mother's house for the holiday, where my entire family had long been planning to meet Melissa and see us off overseas. I had missed
last Christmas and wasn't going to miss this one, although I had to bargain with my doctors to arrange it. Whether or not I needed chemotherapy was controversial, and we hoped the upcoming second opinion, at the Dana Farber Cancer Institute, would help us decide. I could begin radiation in the meantime.
Ten days before Christmas I had my radiation-treatment planning session. The area to be radiated was carefully measured and small blue spots were tattooed around the edges of my breast so that the machine could orient itself each time. I learned where I would change into the plain gown and at what time I would come each day. I was finally on my way to getting some sense of order into my life. The cancer had happened but now we were moving on. Melissa was healthy and happy, apparently not fazed by multiple babysitters and by the underlying tension. Radiation would be done by early February and we could still go to Samoa.
The next day we went to Dana Farber and another bomb exploded. The doctor discovered calcifications on my mammogram that the radiologist at our HMO had missed. He informed me that this could be evidence of a precancerous condition called intraductal carcinoma, which is generally so widespread and has such a high rate of transforming itself into invasive cancer that radiation won't kill it. The only approach is surgical.
Immediately I was sent for spot magnifications to confirm the calcifications. In the mammogram suite the technician compressed my breast so fully that milk was expressed, even though I hadn't nursed for more than a week. I wept as my breast wept and waited for them to read the film. Was this really happening to me? The thing I had been most grateful to avoid, a mastectomy, was looming frightfully close.
My ordeal grew even worse. A few days after our visit to Dana Farber, the pathologist called to say he had reviewed my slides and found cancer in one of my lymph-nodes. So my nodes were not negative as previously thought. My disease was now classified as stage two and required six months of chemotherapy. When I received this additional information, I almost thought it was a joke. Could anything else go wrong?
We were angry, confused and incredulous. Chemotherapy meant not only canceling our overseas plans, it also meant six long and difficult months. I had to prepare myself for the possibility of hair loss, nausea and vomiting, increased risk of infection and premature menopause. That, of course, meant no more children as well as the likelihood of hot flashes, brittle bones, decreased sexual drive and several other symptoms.
But what really shook us was our total loss of faith in our doctors. Several of them had reviewed my mammograms and missed the calcifications, and two pathologists had misread my slides. It was frightening to realize that if my husband hadn't pushed for a second opinion, I would have been misdiagnosed and mistreated, with life-threatening consequences.
Our only option was to rind new doctors whom we could trust. After intense negotiations, our health plan allowed us to use doctors outside of its system. We spent a furious week interviewing surgeons and plastic surgeons. It was exhausting to have to recount my story repeatedly and to be on edge, always trying to judge each doctor. Getting personal recommendations for doctors who worked out of good hospitals seemed to be our best bet. Then we decided based on our interviews.
My doctors' mistakes had a double impact because not only was my life in the balance but also my professional identity. What good was it to be a physician if we screwed up so much? How could I ever support my family-medicine/primary-care bias when I had needed to go to one of the best cancer centers in the world just to get the correct diagnosis? Breast cancer is not a rare disease (this year 180,000 American women will be diagnosed) and mine was a garden variety. I live in a midsized city in the Northeast that is considered to have excellent medical care. How could so much have gone wrong?
It turned out that in addition to the positive lymph-node, I did indeed have more calcifications, most likely representing a large area of intraductal cancer. Ironically, whereas my more dangerous invasive tumor could be treated with lumpectomy and radiation, this precancer (akin to an abnormal Pap smear) required a mastectomy. I was amazed to learn that doctors know very little about this relatively common type of breast cancer. Intraductal cancer is thought to involve intermittently large areas of the breast. A positive biopsy can prove the cancer exists in one area; but even multiple negative biopsies can't guarantee that it isn't occurring just a few millimeters away. The accepted solution has always been to remove the entire breast, which gives a 100 percent cure. Alternative diagnostic and therapeutic methods have not been well investigated. I was shocked that even in 1992 I had to search to find a doctor who wholeheartedly supported breast conservation and was willing to discuss other less radical options.
After an excruciating Christmas week of decision-making, I opted to have a quadrantectomy, in which one quarter of my breast would be removed. I knew that if the intraductal cancer came up to the margins of the pathology specimen I would then need a mastectomy. That would mean two surgeries instead of one; but I decided that I couldn't live with myself if I had a mastectomy and then got a report that showed my breast had been predominantly normal tissue. My new surgeon did an excellent job and I recovered quickly.
We had prayed for a good pathology report but didn't get it. The intraductal cancer covered the entire area of breast removed, right up to the edges. I needed a mastectomy. Somewhat resigned, I started a new round of decisions about whether to have breast reconstruction done at the time of my mastectomy or as an additional surgery later. Once I decided to have the two procedures at the same time, I had to choose one of several types of reconstruction. It was now almost two months after my initial diagnosis and I did not have time to waste. In late January I underwent a mastectomy and a breast was made using a saline implant and a muscle from my back. It was an eight-hour surgery that kept me in the hospital for five days and recuperating for several weeks after that. It, too, went well, a testament to my having searched out caring and competent physicians.
I started my chemotherapy in March. I was to have my three drugs (Cytoxan, Methotrexate and 5 Flourouracil) given intravenously for eight three-week cycles. It is common for a chemotherapy cycle to be delayed because it takes longer for the bone marrow to rebound and start making new white cells as the toxic effects of the drugs accumulate. A lowered white cell count means the body can't fight infection; the blood must be monitored very closely, and treatments are withheld if the count is too low.
My first treatment left me feeling polluted, as if my body had been soaking in a toxic-dump site. I couldn't even smell food because of the nausea, and I felt so heavy I didn't want to get out of bed. The next morning I woke up retching. After twenty-four hours the worst had passed, but mild nausea and generalized fatigue continued for almost a week. However, I had learned what the treatments required of me, and although they were lousy I knew I could make it.
I wasn't home free, however. The nightmare of medical-system failures came back to haunt me. My second chemotherapy cycle was started without anyone noticing that my white-cell count was lower than it should be. Luckily, early in the treatment I asked the nurse to check my chart and she immediately returned to pull out my IV. I was angry and frightened. It felt like no one was in control.
My oncologist was reluctant to use Zofran, an expensive but very effective antinausea medication, because she thought my regimen was too mild to require it. She told me that other medications could be tried but that I might just be "one of those people who always retched." I don't like retching and I didn't appreciate her attitude. It was time to find a new oncologist.
At that point we were used to having things go wrong, but also very tired of fighting. We decided that any further medical care relating to my breast cancer would come from one of the larger medical centers one hour away. Our treatment at those centers had so far proven to be superior to anything I had received closer to home. I had become fully convinced that specialty problems like cancer are best handled at specialty centers. I could not feel safe in my local medical community.
What may be amazing to anyone who has not been a patient is that these are just the big things that went wrong. I haven't mentioned how I woke up retching from general anesthesia to a chorus of gossiping nurses and a blaring television. Or how the anesthesiologist gave me grossly inadequate pain control because I was still breast feeding. Or how when I asked for physical therapy because I couldn't move my arm above my shoulder I was told it wasn't necessary.
As a physician my gut reaction is to defend the system. These things don't really happen; only patients who are complainers experience it this way. That put me in the bind of blaming myself for things that clearly weren't my fault. It dawned on me that it was easy to feel guilty in a system where the individual patient's needs are overwhelmed by the workings of the medical environment. Patients generally do not know the "rules" and take their cues from the medical personnel around them. Asking for something out of the ordinary does not help the system function. One feels almost ashamed to ask, and many patients never do.
That the onus is on the patient to assert her needs is not fair given that the patient is sick, emotionally stressed and in no position to be demanding. One fears retribution from the very people one is depending on to save one's life. Lucky patients have family members or friends to play the role of advocate. I would hardly have made it without the support of my husband. Yet patients who have no such support fill the hospital beds. It takes incredible strength and courage to put oneself through painful and humiliating exams and treatments. Medical providers should recognize and commend that strength.
It's summer, and my chemotherapy is over. As horrible as it's been, I'd have to say I've done well. I have been working half time at a local health center since a month after the mastectomy. My other half-time job is Melissa, who is often more challenging than work. My husband and I have been able to keep up our social life and have tried to take special outings to lift our spirits. Emotionally and physically I'm ready to move on.
What has helped me get through this so well? The encouragement of family and friends, particularly my husband, has been the foundation, and support groups have allowed me freedom of expression in our cancer-phobic society. For eight weeks I met with ten women and discussed the specific losses caused by breast cancer. Our breasts, our hair, our menses, our fertility -how could one disease affect femininity on so many levels? It has been a relief just to be in a room where I wasn't the only one with cancer or the only woman with an abnormal or absent breast.
Participation in alternative medical treatments-special diets, acupuncture, Tibetan herbal medicine, meditation, visualization-has helped me face the rigors of Western cancer treatment. These treatments have helped decrease the side effects of surgery and chemotherapy and have helped me maintain my self-confidence through this intensely brutal process. Alternative treatments also attempt to eradicate the cancer by strengthening the immune system, without losing sight of the patient's human needs. Traditional medical care, when it fails to give emotional support, creates almost as much stress as the disease itself. As the medical establishment is now, there are times I almost feel ashamed to be a physician.
Sometimes I've wondered if my cancer stemmed from emotional causes. I've been catapulted into a self-inquiry requiring the tenacity of a rock climber. Something better be uncovered or I may slip off the mountain. I've been ambivalent about this process; while I've grown emotionally, I haven't learned any one specific lesson. And cancer has not been the only stimulus.
Becoming a mother has changed me as much as, if not more than, my experience with cancer. It is difficult to pull apart the fabric of my life and unravel the two interwoven threads. Do I feel life is more precious because I am viewing it through my daughter's inquisitive eyes? Or is it because I've seen the face of death? Both cancer and motherhood are watersheds from which there is no turning back.
Some changes in my life are more linked to cancer. All of my relationships have shifted in some way. Some friends have become closer and others have drifted away. Wonderful people have entered my life whom I never would have known otherwise. I am more thoughtful, more often sad and more appreciative of all that is good in my life. Cancer is a constant reminder to be present in the moment, because life is slipping by us every second we are unaware.
Cancer's greatest impact has been a loss of innocence. I no longer trust that everything will work out. I know that bad things can and will happen. Sometimes I wake in the middle of the night with free-floating anxiety. I fear that a terrible catastrophe will harm Melissa or that my cancer will recur. Occasionally I stare into the dark and think about when Melissa was small, before the cancer was detected, and how things might have been.
Usually I just keep going. My life has been a metamorphosis from infertile woman to pregnant woman to mother, and from resident to physician to patient. I have learned that there is a constancy through all these changes, and that I am strong, capable of surviving numerous emotional and physical assaults. I hope for a long life, another child and our family happily immersed in the rhythms of the tropics. And I know each of these dreams is within my reach.
Several months after completing this article, the author had a recurrence and is now undergoing treatment. She is doing well and reports that her medical care has improved.