The day I found out that I was terminally ill, it was misty, just barely raining, appropriately gray and damp. I was 51 years old. My life was normal — wonderful, in fact.
My mother and I, both in our raincoats, both carrying umbrellas, were walking down a city sidewalk miles from home when my cellphone rang. It was my oncologist calling to give me test results; she knew I’d want them before a medical appointment the next day. She told me gently. I hung up.
“It’s stage four,” I told my mother. “The bone biopsy showed that the cancer has spread. It’s in my lower spine.” The diagnosis seemed to drop from the sky, rain clouds turned to lead, crashing down on us. We hugged, crying, my tiny mother, her tall daughter. One wet, raincoated shape as we held one another, our umbrellas forgotten.
“Take three deep breaths,” I finally managed to say to her. We tried. But as we inhaled, suddenly both of us began laughing, uncontrolled belly laughs, despite — and in defiance of — the damp death sentence that had just fallen from the sky.
That was more than 18 months ago. Now, the medical countdown toward the end of my life continues. And I’ve done a lot of thinking about how best to live the limited time I have left.
I had felt fine. But a small, red, rough-textured spot (not a lump) about the size of a pea had appeared on my right breast. I was educated as a registered nurse, led quality-improvement efforts as a health-care administrator and now am at a foundation focused on improving the health of our nation’s older adults. But even without that background, I’d have known something was wrong. Anyone would.
My primary-care physician quickly arranged for me to have scans and a biopsy at a local hospital. Both of us were aware that the red spot might be cancerous.
The night before my hospital appointment, I was wide awake, reading. Breast cancer, in general, has a five-year survival rate nearing 90 percent. But inflammatory breast cancer, which I suspected the spot might be, is different. It’s an especially aggressive form of cancer where the breast itself eventually can become red and swollen, and even develop a diseased open wound. But most frightening is that it tends to spread to other parts of the body. Of those who receive diagnoses of inflammatory breast cancer, at which point it’s usually stage III or IV, only 40 percent live to five years.
That night my research revealed that despite all the funding going toward curing breast cancer, what seemed an insignificant amount goes toward finding a cure for inflammatory breast cancer. The next morning, before most people had had their first cup of coffee, I was in the hospital, watching as a radiologist extracted “core samples” of my breast tissue. In a clear, informational way, she explained what she was doing and what she was seeing. She noted eventually that the samples appeared to be malignant. I appreciated her honesty.
When the biopsy results were back, I met with an oncologist in New York, where I work. After she gave me a physical exam, we sat quietly in her office, lined with its reassuring books and diplomas. She looked me in the eye and in a soft voice told me the diagnosis: inflammatory breast cancer. Hearing it said out loud was almost anticlimactic. I’d thought so. And the radiologist who had taken the biopsy had gently helped prepare me for the news.
I told the oncologist that I knew inflammatory breast cancer was incurable and that there was no cure in the offing. She confirmed what I’d read about the survival odds. She told me she didn’t like the word “terminal,” but I knew that’s what she meant. I might have far less than five years to live. “Not . . . five . . . years.” How final.
She asked me how I wanted to move forward and what my goals were. My thoughts drifted to my grandmother, who had had Alzheimer’s disease. I remembered how she disappeared into the illness, frail, sad and frightened. “I want to feel good for as long as possible,” I told the oncologist. “Don’t push to extend my time if I’m not able to have that.” She nodded and put her hand on mine.
“Here are my suggestions, then,” she said. “I’ll arrange a body scan to see if the cancer has spread.” If the disease was still confined to the breast, she said, “I think we should be aggressive. That could give you a better chance at a longer, better life. But if the cancer has spread far beyond the breast, we can talk about less aggressive approaches that could slow the cancer but have fewer side effects for you.”
The body scan showed a “hot” spot in my lower back. It could mean cancer or something as benign as a minor back injury that was healing. The only way to know was to remove a small piece of bone from the spine, so I underwent the surgical procedure and waited for the results.
It can take years before scientific breakthroughs and innovations become common medical practice. Although no cures were on the horizon for my disease, I figured that some newer ways to treat this kind of cancer might exist.
I had come across information about a specialist in inflammatory breast cancer at a respected cancer center nearby. My oncologist assured me that if the specialist could suggest a treatment, she would work with him on my care. She sent me off to an appointment with him carrying her blessings and slides of my cancer cells packed in a box.
It was on that trip that I was walking with my mother on a rainy afternoon and my cellphone rang and my oncologist explained that the breast cancer had spread to my spine. This meant that I would be telling the specialist the next day that I had the worst possible diagnosis.
That day came, and as we walked into the lobby of the top-notch cancer center we saw that contemporary art graced the airy space. The aroma of freshly brewed coffee mingled with the scent of flowering bouquets. An attentive nurse directed me into the office of the preeminent expert in inflammatory breast cancer.
He wore a tepid smile and a dark moustache and greeted me with little fanfare. His eyes eagerly focused on the slides I had brought. After a brief physical exam, he advised intensive chemotherapy, radiation and a mastectomy, followed by more chemotherapy.
Why? I knew there was no cure for stage IV inflammatory breast cancer.
“This is not a cure,” he told me. “But if you respond to the treatment, you might live a little longer — although there are no guarantees. All of my patients use this protocol.”
I asked why he wanted to remove my breast when the cancer had already spread to my spine. “You don’t want to see the cancer. Do you?” he answered, looking annoyed.
I was stunned, then angry.
The specialist never asked me what I wanted. He didn’t mention my needs or treatment goals. He didn’t know — or seem to care — that my hope was to extend my quality time on this planet rather than merely linger. He didn’t care about the toll of the treatments on my body and my remaining days.
Were I to choose his one-size-fits-all approach, I’d strip myself of the very type of life I’m pleased to have now, probably without gaining any benefit. If I had detected even a whiff of caring about me as a person or as a patient, I would have explained, “No, that’s totally wrong for me. I want to work, enjoy family and friends, do things that are important to me — while feeling good — for as long as possible. Once I can’t, I’m not interested in aggressively extending the length of my life.” But it didn’t seem worth it.
My mother and I left quickly.
Too many patients have doctors like that specialist. A cancer-survivor friend told me that her oncologist once said, “I wish I could just treat the cancer; patients get in the way.” Another friend, with stage IV cancer, was advised by her oncologist to skip a three-hour car ride to visit her new granddaughter because she’d miss a chemo appointment, one that would do nothing to change the fatal nature of her advanced disease.
Why do these and so many other doctors miss that patients have their own needs and desires? William Osler, the Johns Hopkins physician who has been called the founder of modern medicine, understood. As he put it, “The good physician treats the disease. The great physician treats the patient who has the disease.”
I realize that doctors want to cure, to save lives, to instill hope. Perhaps that also makes it difficult for them to tell patients they’re dying. Maybe, hoping that each terminally ill patient will be that one-in-a-million outlier who lives, doctors temper their words. “Terminal” becomes “advanced illness.” The words “we’re going to treat this aggressively” are uttered even though treatment isn’t cure. Patients like the sound of “treat aggressively.” It seems as though doctors are fighting for us, but few truly understand what the phrase means. Because of my nursing background, I know all too well.
In the case of incurable cancer, it can mean rounds of radiation and/or chemotherapy with side effects of crushing fatigue, overwhelming nausea, burned and peeling skin, permanent pain or numbness of fingers and toes, and the cognitive impairment known as “chemo brain.” The “treat aggressively” approach can leave patients bruised and battered, wishing they were dead.
Yes, perhaps a few months of added life come with it — but at what cost? Furthermore, recent evidence suggests that people with certain cancers might actually live longer — and better — using a palliative approach, such as the one I’m taking.
Palliative care is not hospice care, although palliative care and hospice care often occur in tandem. Rather, the focus of a palliative approach is to prevent patients from suffering. It can be used at the same time as cures are being attempted — going hand in hand, for instance, to relieve side effects such as nausea. It can be used with chronic conditions, such as back pain. It can also provide comfort and symptom management at the end of life. It’s about providing the best possible quality of life whatever your condition.
Recent studies suggest that fully informed patients nearing the end of their lives are less likely to choose aggressive care when they understand what they can realistically expect. They are also less anxious, and they rarely end up in intensive care units or on ventilators.
Because my progressing illness is incurable, I’ve chosen a solely palliative approach, and my oncologist has embraced my choice. Together the two of us chose a treatment regimen that would slow tumor growth while protecting what was precious to me, my quality of life. Instead of waging war with a disease that can’t be cured, my doctors and I are focusing on treatment that optimizes how I function and addresses my symptoms. This treatment will include, when I need it, comfort care for pain symptoms.
I’ve been fortunate so far, in that my pain isn’t bad. I get twinges in my right breast. If at some point it is overtaken by disease, I’ll probably have it surgically removed as a comfort measure. I also have a dull ache in my lower spine that I notice primarily if I stand too long or carry a heavy bag.
I want every patient facing end-of-life decisions — which, when you think about it, eventually will be all of us — to have access to the kind of open communication I’m receiving. Each patient deserves to understand the diagnosis, the probable course of the disease and the likely timetable. Each deserves to be asked about personal goals, and each deserves help with making treatment decisions. We also need a process that helps doctors learn that the length of patients’ lives isn’t the sole consideration.
As you read this piece, I’m heading toward two years into a terminal diagnosis. I have the most deadly form of breast cancer, and it will eventually kill me. So far the disease seems to be held at bay by one small yellow pill each night (an estrogen blocker to slow the cancer’s growth), some extra vitamins and minerals, and a monthly infusion to stave off such problems as spontaneous fractures that can be caused by the cancer eating at my spine. No treatment will work forever, though. I know that. But however my story evolves, then ends, I’m at peace. And I’m living just the way I want to.
Berman is a registered nurse and senior program officer at the John A. Hartford Foundation in New York. This article is excerpted from the Narrative Matters section of the journal Health Affairs and can be read in full at www.healthaffairs.org.