Breast Cancer – Living with the Disease – part 1

When Amy Berman was diagnosed with Stage IV breast cancer a year ago, she made a courageous choice. Instead of fleeing death, she decided to pursue life. In the essay below, she describes why she rejected chemotherapy, radiation, and surgery, choosing palliative care instead.

Not everyone would approve. As she explains in part 2 of this post, a highly-respected oncologist tried to persuade her to submit to a more aggressive course of treatment so that she might live a little longer–“no guarantees of course.” Chemo, radiation and a mastectomy, followed by more chemo– this he told her, is what he recommends for all of his patients.

By contrast, Amy suggests that when facing death each of us needs to choose her own path, with the help of doctors and nurses who explain the options.  In her case, she explains: “my goal was to maximize the quality of my life so I can live, work, and enjoy my family with the least pain and the most function.”

Amy, who is in her 50s,  is less interested in how long she lives than in how well she lives. All of us face the limits of our mortality, but even if we cannot extend the length of our lives, we can expand the depth of our experience on this planet.  As the late 19th century writer Walter Pater put it: “we are all under sentence of death  . . . we have an interval, and then our place knows us no more. Some spend this interval in listlessness, others in high passions . . . the wisest, in art and song.  For our one chance lies in expanding that interval, in getting as many pulsations as possible into a given time.”

Amy is getting as many pulsations as possible into the time she has left, embracing the pleasures of enjoying her family, and her work. Her experience reminds me of a story I heard a year or two ago from a woman whose mother and sister both had died of breast cancer.  Her mother was in the U.S. when she was diagnosed, while her sister had moved to Europe. (If memory serves, she lived in Denmark.)  Their final months were very different. Her mother, like many breast cancer patients in the U.S., opted for surgery and drugs that left her exhausted, incapacitated and in pain.   Her sister, on the other hand, chose a gentler course of treatment. Like Amy, she continued working until shortly before her death. In her final months, when her sister and father came to visit her, she was well enough to enjoy going out for a quiet dinner.

In the U.S., the phrase “breast cancer” terrifies most women because we assume that if the cancer cannot be cured, we are condemned to a prolonged, agonizing death. As Amy’s story demonstrates, this is not necessarily true.  In this country, we make hard work out of dying of cancer, in part because, too often, no one tells the patient that treatment aimed at “cure” is futile.  At best, it might extend the patient’s life by a month or two. Some suggest that oncologists should never tell a woman that that her disease is terminal because it “robs the patients of hope.”  I would argue that by avoiding the truth, a physician robs the patient of her right to choose how she wants to die.

Let me be clear: as a woman, I still dread the phrase “breast cancer.” But I am convinced that if a patent has some control over her fate, and chooses palliative care– whether from the outset, or later on– she stands a much better chance of savoring her final months of life.

This post originally appeared on The John A. Hartford Foundation blog where the Foundation’s “Health Agenda” is “dedicated to introducing aging and geriatrics into the broader conversation around health, health care and health policy.”  Amy serves as senior program officer at the Foundation.

Many thanks to the Hartford Foundation for sending me this piece. Most of all,  my thanks to Amy herself for sharing her experience with such grace and eloquence.  After I read her essay, I discovered that she is a long-time HealthBeat reader who lives in New York. We hope to meet sometime soon.

At the end of this post, please seen my comments on Amy’s advice that we “Think Silver, Not Pink.” We should not be “pink-washing” the truth about breast cancer and breast cancer treatment.

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Think Silver–Not Pink–for Breast Cancer Awareness Month

Amy Berman
by Amy Berman

October 27, 2011

I have been celebrating Breast Cancer Awareness month. This isn’t just because I had the good fortune to celebrate my birthday in October, but because one year after being diagnosed with a terminal illness and choosing to treat it non-aggressively, I feel great. I have less pain than I did one year ago. The shooting pains I often felt last year in my right breast have almost entirely vanished, thanks to my hormone-suppressing drugs. My lower spine—the site of metastasis—aches only occasionally, and only when I overdo it. If I get plenty of rest and fluids, eat right, and avoid standing for long periods or lifting heavy objects, I remain pain free. Although I may take a few more breaks than I used to or find myself more tired at night, I can still fill each day with meaningful activities, just as I always have.

I can honestly say that this has been the best year of my life, both personally and professionally. I have been able to spend quality time with my family, while taking advantage of numerous opportunities to speak and write about the importance of individuals being involved in decisions about their own health care, in addition to my ongoing work as senior program officer for the John A. Hartford Foundation. I have been more loving, more accepting of love, and I believe more effective personally and professionally than at any other point in my life.  And I feel good.

It may sound odd but—honestly—I am living with Stage IV cancer and it’s been a great year.

Yet while celebrating my unexpected and very welcome happiness, I cannot help but think about others living with cancer and other serious illness this month. My experience is atypical, and not just because I chose a palliative, non-aggressive treatment. I am atypical because I am in my fifties. Most cancer patients—63 percent, in fact—are over age 65. This means that most cancer patients aren’t suffering only from cancer, as I am. Most are also simultaneously coping with other chronic diseases, such as diabetes or congestive heart failure, making it more difficult for them to tolerate debilitating treatments. And for some older adults, their health status before the cancer diagnosis may challenge their recovery.

Because cancer is primarily a disease of aging, we shouldn’t be thinking pink for Breast Cancer Awareness month—we should be thinking silver.

I shudder to think of how I would be feeling had I not been an informed patient, able to fully participate in my own treatment decisions with the help of my medical team. Had I been steered into aggressive treatment, I would likely be recovering from painful surgery while incapacitated due to the overwhelming fatigue, pain, and nausea that go hand in hand with radiation and chemotherapy. If patient-centered care can do so much to keep the quality in what remains of my life, how much more important is patient-centered care for older adults facing not only a terminal diagnosis, but also the presence of one or more chronic diseases? Older adults need care tailored to their individual diagnosis, health status, goals, and beliefs long before they grapple with terminal illness such as mine.

Thankfully, I am not the only one concerned about this issue. The Raise the Voice campaign, an initiative of the American Academy of Nursing, recently hosted a Critical Conversation on best practices in advanced care planning and decision making. The organizers gathered nurse and physician experts in advanced care planning to share best practices, and also included a nurse who could serve as a patient voice. That was my role. When I had the opportunity to speak, I noted that even though death is a common occurrence—2.4 million Americans die each year—conversations around end of life care remain uncommon.

This seems strange to me. We are consumers of health care.  In most other areas of our economy, our consumer protection laws afford us safeguards.   Health care is, ultimately, a product that we all have to buy, either directly or indirectly through our insurance companies. Yet when we are making the most critical decisions about our health, we are not routinely guaranteed as patients to have full information about our condition and all possible treatment approaches.  The decisions are left entirely to the discretion of the doctors and hospitals patients use.   And while some health care providers integrate the patient and family in the planning process, we are guaranteed a more full disclosure when buying a house than when battling serious illness.

I believe disclosures about treatment for serious and potentially life-limiting illness should be required. Conversations about the end of life are difficult, but not impossible. Doctors, nurses, and all health professionals have more and more tools at their disposal. We can help patients choose a health care proxy and fill out the POLST form, as my oncology center, Maimonides, does so well. Many organizations are now providing training for providers to help them learn how to approach end of life conversations with their patients, such as the End-of-Life Nursing Education Consortium (ELNEC) led by the City of Hope and the American Association of Colleges of Nursing. At the Raise the Voice meeting, Suzanne Prevost, President Elect of Sigma Theta Tau (the Honor Society of Nursing) and Associate Dean of the University of Kentucky, shared an interesting approach to helping patients understand the differences between treatment options. In a small study, researchers showed terminal cancer patients a video that included patients who chose aggressive care and patients who chose palliative care. The images were neither shocking nor graphic. After seeing the video, many patients who had intended to choose aggressive care changed their minds and chose palliative care.

I am not saying, of course, that palliative care alone is always the right choice. I just believe that patients deserve to make informed choices. All I ask, as Breast Cancer Awareness month comes to a close, is for providers and policymakers to understand that every person experiencing cancer or other serious illness deserves an opportunity to choose a treatment approach tailored to his or her beliefs, hopes, and tolerance, based on the diagnosis, the likely course of the disease, and the chances for survival. Think about the older adults in your life. Would you want them to have a say in decisions that affect how they live for their remaining days and how they die? If we can all “think silver,” perhaps we can make health care better for older Americans.  Here’s to another good year.  Cheers.

Why We Should Think Silver, Not Pink

I long have had mixed feelings, at best, about those pink ribbons that are supposed to cheer us on in the fight against breast cancer. So when I read Amy’s headline, “Think Silver, Not Pink,” I was intrigued.

From the beginning, the pink ribbon campaign was a commercial enterprise. As Naomi explained in a 2009 HealthBeat post: “The concept was introduced in 1985 by AstraZeneca, the giant international pharmaceutical company that makes the breast cancer drugs tamoxifen and Arimidex. October is “Breast Cancer Awareness Month” and  by October of 2009 Naomi observed:  “the sea of pink has reached tidal-wave proportions. Every conceivable product from yogurt to running shoes to breakfast cereal now sports the ubiquitous pink ribbon. This month some NFL players will wear pink cleats, still more will don helmets festooned with pink ribbons, and legions of supporters are participating in walks, runs and bike rides to raise money for breast cancer causes. The collective spirit has been awakened; the American public wants progress on breast cancer!

“But besides being a great marketing tool for selling ‘things,’” she asked, “what, ultimately, is the purpose of National Breast Cancer Awareness Month?” Ostensibly, Astra Zeneca’s goal was to promote regular mammograms as the most effective weapon in fighting breast cancer.

Raising public awareness about preventive care sounds like an admirable goal. But stop and think about it for a minute: what woman in America hasn’t heard about mammograms?

By contrast, here is what most women have not heard: that the American College of Physicians does not recommend mammography for average-risk women under the age of 50 and over the age of 74. This is because when younger women are diagnosed with breast cancer, too often, they are biopsied and treated for small lesions that might well have disappeared on their own. Meanwhile, the majority of women over 70 who are diagnosed with breast cancer will die of something else before the disease catches up with them. In this way, breast cancer is like prostate cancer: a great many older women will die with the cancer, but not from it, and most would never know they had it –unless someone insisted on a mammogram. This why the College of Physicians believes that the risks of unnecessary treatments outstrip benefits.

I recall a comment from a HealthBeat reader who described how an elderly relative who was suffering from congestive heart failure, was diagnosed with breast cancer while in the hospital.  (A conscientious doctor had decided that she should be screened and tested, for breast cancer, along with many other maladies.) Once diagnosed, she was scheduled for a mastectomy.  She died on the operating table. Her heart couldn’t take the stress of surgery.

I would suggest that if patient advocates want to raise awareness about breast cancer, they should give the public the facts about the limits as well as the advantages of screening. In an editorial published in BMJ, H. Gilbert Welch, professor of medicine at the Dartmouth Institute for Health Policy, sums up the pros and cons: (figures are per thousand women)

–1 in 1,000 women annually screened for 10 years will avoid dying from breast cancer.

–2 to 10 women will be over-diagnosed and treated needlessly

–10 to 15 women [who have regular mammograms] will be told they have breast cancer earlier than they would otherwise have been told, but this will not affect their prognosis, either because the tumor is growing very slowly (and they will die of another cause), or because the cancer already had begun to spread. In both cases, screening does not save the patient’s life. Early detection simply means that she spends more months or years, living in dread– knowing that she has breast cancer.

The numbers are startling: mammography saves so few women. If 1,000 dutifully show up for screening, every year, for a decade, just one will be rescued. How can this be?  The truth is that the tumors that are most likely to prove fatal are aggressive tumors that spread rapidly. They can spring up and develop in between annual screenings. In other cases, mammography simply fails to detect the cancer. Finally, we don’t have effective treatments for all breast cancers.

For example, Inflammatory Breast Cancer (IBC),  the type of  cancer that invaded Amy Berman’s body, does not manifest itself as the “lump” that most of us associate with breast tumors: “When it is found, it is almost always in a late III or IV stage – meaning that it has metastasized (spread) to other parts of the body.” And “it is often missed by mammograms.”  A woman may have a “clear mammogram”– and be diagnosed with IBC a year later.

Nonetheless, after absorbing all of this information, many women still will choose regular mammograms. After all, they think, “I might be the one in 1,000 who is saved.”  I won’t argue with their choice. Yet, as Dr. Nortin Hadler points out in his most recent book, Rethinking Aging, for “every one woman who is spared, ten will undergo surgery, chemotherapy/and or radiation to no avail.”  Personally, I don’t like the odds.

             What Pink Ribbons Hide

Pink Ribbons are meant to symbolize hope: We can beat this disease! The campaign’s organizers tell us that the ribbons represent “femininity,” “the curves of a woman’s body,” and being in good health (“in the pink”). Nothing about “pink” can be bad — right?

But wrapping breast cancer in pink ribbons hides some of the harsher truths about breast cancer and breast cancer treatments. On her blog, Healthy Barbs (New Ways of Thinking About Living With Disease), Barbara Brenner names “just a few things that the pink ribbon doesn’t represent:

·        the limits of early detection,

·        the ineffectiveness of current treatments to keep women with metastatic breast cancer from dying,

·        the environmental triggers of the disease (only at most 10% of breast cancer is caused by an inherited genetic mutation), and

·        the racial inequities in both the incidence and mortality rate from breast cancer.”

This, in a nutshell, is what “Breast Cancer Awareness Month” has never had.

Why “Silver”?

Think pink” tends to emphasize that we can and will cure breast cancer. But roughly half of all women diagnosed with breast cancer are over 65; often they are much older. They may or may not want to chase a cure.

“Had I been steered into aggressive treatment, I would likely be recovering from painful surgery while incapacitated due to the overwhelming fatigue, pain, and nausea that go hand in hand with radiation and chemotherapy,” Amy writes. Often, silver-haired patients “aren’t suffering only from cancer, as I am,” she adds. “Most are also simultaneously coping with other chronic diseases, such as diabetes or congestive heart failure, making it more difficult for them to tolerate debilitating treatments.

“If patient-centered care can do so much to keep the quality in what remains of my life, how much more important is patient-centered care for older adults facing not only a terminal diagnosis, but also the presence of one or more chronic diseases? she asks. “Older adults need care tailored to their individual diagnosis, health status, goals, and beliefs long before they grapple with terminal illness such as mine.”

As Amy points out on other posts, older Americans face daunting obstacles: How can “the millions of older Americans facing a terminal illness or chronic disease . . .   possibly stand up to the juggernaut of our health system and say, ‘No. I want care that focuses on my goals, care that is centered on me? ’”

“Sadly” she notes,  “some providers withhold information from older adults out of some archaic and ageist notion that they can’t handle the truth.”

In the end, compassionate, patient-centered care goes beyond “cure.” It includes “comfort.” Often, this is what a dying patient yearns for, more than anything else in the whole, wide world.