Breast Cancer – Living with the Disease, Part 2

“The Best Care America Has To Offer”

Below, Amy Berman describes her recent journey through our health care system as “eye-opening.”  In part 1 of this post, she explained why she decided on palliative treatment for breast cancer, rejecting aggressive procedures such as mastectomy and chemo.

A year after her diagnosis, she remains comfortable with her decision: “The likelihood is that I will live as long– if not longer–than if I had made another choice.” In fact, studies of palliative and hospice care suggest that patients who choose these alternatives suffer less stress, and as a result, may well outlive other terminal patients.

Amy is delighted with the care she has received at Maimonides Hospital in Brooklyn, New York. At the same time, she reports, in the year since she was diagnosed with Stage IV breast cancer, “I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand.”

This essay originally appeared on the John A. Harford Foundation blog in January

Can Good Care Produce Bad Health?

By Amy Berman

At the cancer’s earliest appearance, I consulted with a well-regarded oncologist in New York. After the tests were done she regretfully informed me that my disease was not curable. Because my cancer is hormone-receptor-positive, she recommended an evidence-based course of medications aimed at slowing the progression of the disease. Before I committed to this course of care, I wanted to get a second opinion. I secured an appointment with the pre-eminent researcher/clinician in the field of inflammatory breast cancer, at a top medical institution in Philadelphia.

The building was beautiful, the staff attentive. They even assigned a nurse, whom they assured would follow me throughout my course of care. I had no doubt that the care would be top-notch.

Everything changed when my mother and I sat down with the physician. He never asked about my goals for care. He recommended an aggressive approach of chemotherapy, radiation, mastectomy, and more aggressive chemotherapy. My doctor back in New York had said this was the standard, evidence-based protocol for patients in Stage IIIB, whose cancer had only spread locally. But since I am in Stage IV she said I wouldn’t get the benefit of this aggressive, curative approach.

“All of my patients use this protocol,” he said.

I was shocked. “Does this mean I could get better?” I asked.

“No, this is not a cure.” he answered. “But if you respond to the treatment, you might live longer, although there are no guarantees.”

My goals are to maximize my quality of life so I can live, work, and enjoy my family with the least pain and the most function. Would I undergo a year or more of grueling, debilitating treatment only to live with spinal fractures if the cancer progressed?  Would the treatment strip me of the quality of life I enjoy now?  I wouldn’t be cured by the treatment. Would I get the possibility of quantity and no quality?

I pressed him. “Why do the mastectomy?” I asked, puzzled. “The cancer has already spread to my spine. You can’t remove it.”

His brow furrowed. “Well, you don’t want to look at the cancer, do you?”

He made it sound like cosmetic surgery. Considering that a total mastectomy includes months of pain and rehabilitation, I thought that worrying about the view was secondary. Right now, I feel fine. I can work. I am pain free. Did I want to trade that for a slim chance of a little extra time (no guarantees, of course)? Would they be years of living, or years of suffering?

“But what about the side effects of radiation?” I asked. “I’ve heard they are terrible.”

He frowned and seemed annoyed by my questions. “My patients don’t complain to me about it,” he replied.

Inwardly, I shook my head. Of course his patients never complained to him. Most of them were probably unaware that other, less aggressive treatments were viable options for patients with this stage of disease. To me, there were real drawbacks. Undergo aggressive therapy that might buy me a longer life…at what cost? I might never recover my health for the limited period of time I might have following the aggressive treatment. This doctor, top in his field, was reflecting the bias of our medical system towards focusing only on survival. He was focused only on quantity and forgot about quality. The patient’s goals and desires, hopes and fears, were not part of the equation. He was practicing one-size-fits-all medicine that was not going to be right for me, even though scientific studies showed it was statistically more likely to lengthen life. His lack of concern for my focus on quality versus quantity of life reminded me of how so many older Americans are treated at the end of life, shuttled in and out of hospitals and hooked up to countless machines to keep them alive when all they want is to manage pain and symptoms and to spend their final days at home, with their loved ones.

Based on a perverse set of metrics, the Philadelphia oncologist was offering technically the “best” care America had to offer. Yet this good care was not best for me. It wouldn’t give me health. Instead, it might take away what health I had. It doesn’t matter if care is cutting-edge and technologically advanced; if it doesn’t take the patient’s goals into account, it may not be worth doing.

I returned to my original oncologist. I was determined not only to choose treatment that would maximize the healthy time I had remaining, but also to use that time to call on our health care institutions and professionals to make a real commitment to listening to their patients. In the health policy field, we call this patient-centered care. As a nurse and a senior program officer at a health care foundation, I understood my disease and my health care options well enough to make an informed decision about my treatment. . . . We need to make it easier for everyone to obtain care that fits their health care goals. How can we change the system and the measurement of quality to place the patient at the center? I call on everyone involved in health care practice and reform efforts to give serious thought about how we can reorient our health care system toward patient-centered care.



20 thoughts on “Breast Cancer – Living with the Disease, Part 2

  1. This is route is understandable since she has Stage IV inflammatory breast carcinoma. One of the worst of the forms of breast cancer.

  2. Tony–
    Yes, and thank you for the comment.
    I think she is very wise, and I hope that as more people hear her story, they will realize that if someone is suffering from an incurable cancer, they do have choices about how they die.
    If you watch the video, it’s clear that she in good spirits, not in pain, not exhausted, looks great, and feeling
    very good about the past year.

  3. I wouldn’t say that she’s decided to do nothing, she mentions hormone-suppressing drugs. Those are chemotherapy drugs.
    Having known some women who werdiagnoseded from the beginning with Stage IV breast cancer I think that the ones who pick aggressive treatment do tend to live longer. It depends a lot on the woman whether that extra year or two is worth the downsides associated with aggressive treatment.
    To me the important thing is that a woman have a choice. I wouldn’t want to see national guidelines preclude women with Stage IV breast cancer from receiving all that medical science has to offer. The quality/quantity decision is very personal.

  4. Thanks for publishing Amy’s “essays”. I think that anybody who is diagnosed with a Stage IV cancer should think very seriously about palliative care. The drug companies want to sell billlion dollar revenue drugs -they don’t really want a cure, they want cancer to be a chronic, manageable disease to be “managed” by taking powerful, expensive drugs for a lifetime. I admire Ms. Berman for choosing to enjoy whatever time she has left.

  5. The PBS television show, “Religion and Ethics News Weekly” recently aired a two part series on end of life care. The 2nd episode focused on living wills and advance directives. The show featured the Gundersen Lutheran Health System based in LaCrosse, WI and how specially trained nurses lead patients and families through a series of questions about everything from potential treatments and their risks and benefits to their personal values and priorities. Fully 96% of Gundersen’s patients have executed a living will or advance directive vs. something like 25% nationally. Helpfully, Gundersen’s doctors are all salaried so they have no financial incentive to order additional tests or procedures. Patients who want to pursue every aggressive treatment that medical science and technology has to offer can do so but the vast majority of patients, after going through this process, choose more conservative care. In effect, they are choosing higher quality over more days. They get the care that they want and don’t get the care that they don’t want. As a happy byproduct, end of life care at Gundersen costs 30% less than the national average. It looks to me like their approach could be replicated fairly easily by other health systems if they were willing to commit to patient centered care.

  6. Ginger R,Sara, Barry
    The care Amy is receiving is not designed to cure the disease, but to relieve symptoms. It is a purely “palliative” strategy.
    Menawhile, we now have good reaearch showing that people who choose palliative care or hospice care over more aggressive treatments tend to at least as long, and often longer–not because the palliative caredrugs are prolonging life, but
    because they are not depressed and not as stressed as those who are trying to “fight” the disease.
    If women knew that
    — a) their cancer is uncurable
    –b) the truth about the side effects of treatment and
    — c)that those who choose a palliative approach are likely to live as long, sometimes longer,
    the majority suffering from an incurable cancer would choose palliative. (See Barry’s comment above.)
    The media (and some doctors) have left us with the impression that if a person suffering from an incurable cancer chooses aggressive treatment, he may get another year or two.
    That just isn’t true. Most often he or she may get extra days, or at most, months. Or he or she will die sooner as a result of the side effects and stress.
    The FDA has actually approved an extraordinarily cancer drug that gives the average patient an extra 3 days. (At present the FDA is not allowed to consider either “comparative effectiveness’ (comparing a new drug to existing treatments) or “cost-effectiveness” (is it worth the extra $400,000?)This is how such drugs get approved.
    I am all in favor of women having access to all care available. But not when doctors bully them (see Amy’s doctor in Philadelphia)
    And ultimately, taxpayers should not be asked to pay billions for futile, ineffective care. (When Medicare covers ineffective drugs, that is what happens. When private insurers cover ineffective drugs, insurance premiums are higher. )
    Sara– Yes,I also very much admire Amy Berman. And you are right, the pressure to persuade patients like Amy to go through chemo etc. is all about drug companies and others wanting to make profits on people who are dying.
    I’ve heard very good things about Gundersen, and what you say confirms that reputation. Note also that it is in Wisconsin. In health care circles, Wisconsin is one of those states that people refer to as “Canada South.” — a much more enlighthened, and less profit-driven view of health care than in the NorthEast (Mass down to D.C.)
    As you note, the fact that their doctors are on salary is key.
    And Gundersen itself is reducing its revenue stream by encouraging patients to make end-of-life decisions that will a) be better for the patient and b)reduce her end-of-life medical bills.
    Unfortunately, most hospitals won’t do this becuase they don’t want to reduce their revenue stream. And a great many doctors who are paid fee-for-service have been trained to “do everything possible.”
    Changing the way they think about end-of-life care will be very difficult–and will take time. Though as we move away from fee-for-service, it will be easier to change the medical culture.

  7. I must of blanked out with the hormone therapy. Ginger is correct in that Amy is getting a form of chemotherapy intended to block the tumors receptors. So she really isn’t totally palliative. The anti-rec. therapy is intended to fight the disease.

  8. My mother was diagnosed with this breast disease 31 years ago–except hers was NOT estrgen-dependent. She endured 2 years of chemo and radiation, knowing these could only give her longer life, not better life. I admire her courage, but back then we didn’t even realize there might be other options.

  9. Izzibiz–
    I, too, admire the courage of the many women who have gone through conventional treatment for breast cancer — chemo and radiation.
    The tragedy is that when your mother died of breast cancer, women did not know that they had options. If they had known, some would have chosen chemo & radiation but others would have chosen a gentler route.
    I urge everyone to see a “Very Open Letter From An Oncologist,” posted on HealthBeat in 2009.

  10. Two powerful and necessary articles that apply to all types of cancer.
    A friend of mine chose aggressive treatment for cancer of the trachea. The radiation damaged her esophagus so that she can never again eat or drink or swallow saliva. More than a year after concluding treatment she is too weak to go out, has constant fever, and, of course, terrible anxiety and depression. She is 70 years old.
    Obituaries now all say that the deceased died after “a long and courageous battle with ….” One is viewed as weak and cowardly not to take this approach. TV appearances and other public accolades are granted to those who choose to “do battle.”
    My very best wishes to a very wise and very courageous woman. Let us all learn from her.

  11. I totally agree with women having choice. However Amy seems ignorant about stage IV treatment in 2011. Some chemotherapy treatments are not hard to endure. I’m stage IV and have been on chemo for a year and have traveled extensively and am quite productive. I have extremely limited side effects and am currently in remission. One of my friends has inflammatory breast cancer and she was diagnosed when her child was an infant. He is 8 years old now and she has been on treatment off and on as needed. And taking the treatment has given her the chance to raise her child. I think Amy may not realize that some chemotherapy treatments are tolerable and that she can gain many years without too many adverse effects. I can see making the choice if only horrible treatments are the options. But really I know many women with stage IV breast cancer working full time and living fully on treatment. Finally, Amy has not at all given up on treating her stage IV cancer. She’s taking anti-estrogen therapy. This is not palliative but considered active treatment as long as it works. And if it works she’s enormously lucky since it is controlling her cancer as well or better than chemo. Most breast cancer oncologists would be perfectly satisfied if their patients would be able to take effective anti-estrogen therapy. So I’m a little confused regarding Amy’s point. She’s on treatment that many many other stage IV women are on. Nothing new here at all.

  12. Kate–
    Amy is not in any way “ignorant.”
    Keep in mind that she is a trained nurse, and in her position as program director at the Hartford Foundation, she knows a great deal about aging, disease and death.
    But I may have left out ddtails that would help you understand her story.
    So I’ve sent your comment to her. I’m also sending it to an oncologist who happens to be a friend.
    I’ll print their replies.

  13. Dear Maggie, Kate and HealthBeat fans (I am one),
    I don’t use the language that I chose not to have chemotherapy. I chose not to take an aggressive approach. In simple terms I chose a direction focused on quality of life. Here are my details for those that might be interested. But again, my choices are based on the kind of cancer, its stage or how widely spread it is, the likely course of the disease, and my choices about the way I chose to live with the disease. I support anyone’s ability to make an informed choice—aggressive or palliative care. There is no wrong answer, just your answer.
    I take a hormone diminishing drug called Femara. My inflammatory breast cancer multiplies in the presence of estrogen and progesterone. Some do not. This hormone deprivation therapy could only be used because I am post-menopausal. Who knew that early menopause could be advantageous? I also go for a zometa infusion to help prevent bone loss. Having bone cancer (spread from the breast) will make the bone fragile. And unfortuantely the hormone reducing drug will enhance bone loss. So Zometa is the cocktail of the month for me. There were a range of options, all weighed with a team of professionals coupled with literature review. Again, this works for me. But it is not the same as the extremely aggressive chemotherapy, surgery, radiation and more extreme chemo suggested by the aggressive oncologist.
    We all can be right. That’s my point. I am delighted that the year has been grand. I feel good. And the cancer has been at bay with the palliative approach.
    As for those who think aggressive care will guarantee a longer life, the literature suggests for that may not be true. When we aren’t focused on a cure (there isn’t one) we really need to weigh options carefully.
    For those living with serious illness I am sending you my good thoughts and wishes.

  14. LHF, Amy & Kate
    Every type of cancer is different, and within that subset each patient is different.
    But even today, the treatments that are supposed to buy more time
    can leave patients incapacitated and exhausted — or worse.
    I agree that Amy is courageous, and what she is doing seems to be working out very well for her.
    And I, too, am bothered by the way that, in our culture, patients who “fought a long and courageous battle” are praised, while those who chose to take a less aggressive path, focusing on enjoying the time they have left, are not.
    There is no “right” way to die.
    And, as Amy emphasizes in her post, there is no “right decision” for everyone.
    Thank you for your reply.
    Reading the comments from Kate and another reader, I assumed that something about my wording was misleading.
    I shouldn’t have said that you had rejected chemo, just that you had rejected agressive treatment that focuses on “quantity” of life, choosing instead to emphasize quality of life.
    Also, as you say, there is evidence that when patients suffering from an incurable disease choose a less aggressive palliative strategy, often they live longer.
    Here is what is “new” about what Amy has to say (quoting from her comment above):
    “As for those who think aggressive care will guarantee a longer life, the literature suggests that [this] may not be true. When we aren’t focused on a cure (there isn’t one) we really need to weigh options carefully.”
    Kate–Very recent medical researhc has, in fact, shown that patients who choose less aggressive care may well live longer than those who choose a more aggressive approach.
    Many cancer patients don’t realize this.

  15. Below, a comment from Greg a long-time advocate for cancer patients who knows a great deal about the disease.
    Finally, please note Greg’s point that “It’s better to suggest that the “hormone-suppressing drugs” that Amy is taking ” are a form of chemotherapy, but are not chemotherapy. They are intended to block the tumor receptors. However, they are not cytotoxic (cell-killing) drugs
    Here is Greg’s comment:
    “Picking aggressive treatment for stage IV breast cancer may not be better. Perhaps “smarter” should be more in keeping? If what it has is the capacity to achieve total destruction of the tumor cells directly, then sufficient drug should be given to achieve this goal. If the drug does not have the capacity to destroy the tumor cell, and the drug works through an effect on angiogenesis, then the drug should be given at a dose consistent with this aim.
    You may want to reserve aggressive therapy for those patients who will derive more benefit than harm, while identifying the most promising treatment regimens for everyone. In patients with tumors very resistant to cytotoxic chemotherapy, the most promising treatments may be angiogenesis inhibitors, growth factor inhibitors, or more integrative medicine approaches.
    It may be better not to give more aggressive and toxic, mutagenic and immunosuppressive combinations, but to give “targeted” single agents, or give least toxic mutagenic synergistic combinations. Although somthing may be an above-average regimen in some patients, it may not be a highly active regimen in others.
    More emphasis should be put on matching treatment to the patient, through the use of individualized pre-testing, having more respect for minimal partial response or stable disease, when it can be achieved through use of the least toxic and mutagenic drug regimens, and reserve the use of higher dose therapy or aggressive combination chemotherapy to those patients with tumor biologies most amenable to attack and destroy by these treatments.
    It’s better to suggest that hormone-suppressing drugs are a form of chemotherapy, but are not chemotherapy. They are intended to block the tumor receptors. However, they are not cytotoxic (cell-killing) drugs (chemotherapy).
    It would be more proper to call them “targeted” therapy. Targeted drugs are based on a variety of biological mechanisms that essentially stop cancer from spreading. Targeted therapy drugs interfere with specific molecules (receptors and enzymes inside and outside a cancer cell). By focusing on these molecular and cellular changes, targeted cancer drugs go after the “target” in these cells, rather than just all cells (like cytotoxic chemotherapy does).]

  16. Any kind of amputation has to be considered as the last resort, but all too often the Drs just don’t consider the alternatives. Despite the pain, us women need to be given the choices clearly and with the facts. Thank You Maggie

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    • Bridgette–

      You’re welcome to quote the blog–please just include a link to the post.

      Thanks, Maggie

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