Living Life to the Fullest, with Cancer
Amy J. Berman, BS, RN, was diagnosed with incurable stage IV breast cancer almost 2 years ago. In the following interview, she discusses with Value-Based Cancer Care (VBCC) her recent experience, and why she chose to focus on quality of life rather than on the length of her life.
VBCC: Can you share with us your professional background, and how this relates to your cancer diagnosis and treatment decisions, and how this may also relate to other patients with cancer?
Ms Berman: I am a registered nurse and a senior program officer at The John A. Hartford Foundation in New York, which is focused on improving the healthcare of older Americans by providing experts who are capable of supporting good quality care for older adults and by developing models of care that look at how the healthcare system supports good care. We focus on supporting good quality care, and examine the ways that we need to reconfigure, for example, transitions between hospital care and home-based primary care.
I lead the foundation’s area called Integrating and Improving Services, which is focused on developing, testing, and disseminating innovative and cost-effective models of patient care that improve both health and cost outcomes related to older adults.
Approximately 22 months ago a red spot appeared on my right breast. I immediately went to my primary care physician. I had read an article long before that red spot appeared, and therefore I thought that I might have inflammatory breast cancer. My primary care physician was equally concerned when she saw what I saw, and she made an appointment for me to have a biopsy and a localized scan. The results came back that I did in fact have inflammatory breast cancer. When they did a body scan, they found that it had already metastasized to my lower spine.
Most people are diagnosed with cancer at an early stage, but I was diagnosed at the final stage, which is stage IV. Although we have preventive measures and breast self-examinations, this particular type of cancer does not appear as a lump and therefore is hard to diagnose. It is “floating,” so to speak, and only when it aggregates and clogs up the lymphatic system does it begin to appear on the skin. That is why my cancer, which is a rare form of cancer, is typically only diagnosed at stage III or IV.
I am fortunate that I feel good, even 22 months after my diagnosis. I am, indeed, very fortunate, and these 22 months have been tremendous. But if I had made different decisions in the past 22 months, it would not have been a very pleasant period.
When I was first diagnosed, I read about this particular cancer and had discussions with my oncologist in New York. There are no cures for this type of cancer. My cancer has particularly poor prognosis, with the worst outcomes among the different types of breast cancers. The literature suggests that 87% of all patients with breast cancer survive for 5 years or more. Yet only 40% of all patients with inflammatory breast cancer live for 5 years. And for those, like me, diagnosed with stage IV inflammatory breast cancer, only 11% live 5 years. So, unfortunately, my cancer is the one type that skews the statistics for breast cancer.
Once diagnosed, I had 2 very different oncologists. I have the ability to seek out treatment anywhere in the country, and I had read the research literature. With the support and blessing of my own oncologist, I decided that I would leave her and visit an oncologist who was focused on this particular type of cancer, because it is so rare; only approximately 1% to 2% of all breast cancers are of this particular type. My local oncologist and I wanted to see whether there were treatments that perhaps were not yet in the literature. It takes a while for findings to make it into the literature, and reading the literature is not necessarily going to provide the best picture of everything that may be in the early state of research.
My oncologist in New York knew that if what I had read in the literature held true, my focus would be on what I wanted: to live the best possible life for as long as possible, and not to ruin my quality of life. I wanted what I call the “Niagara Falls trajectory”—good, good, good, and then drop off the cliff. I want to maintain the ability to work, to enjoy my family, to travel, and to live life well for as long as possible. I am a quality-of-life person. I think that comes from working in geriatrics, where we see what it means to have poor function, pain, and poor quality of life. What these people want is someone to attend to those needs, not just to focus on the outcome in terms of days of life.
So I got a set of slides containing my biopsied cancer cells from my oncologist and went to visit the specialist oncologist. He performed a physical examination, and suggested that I have a very intensive course of chemotherapy, as much as the body could stand. After that he suggested that I undergo a mastectomy, followed by radiation, and then return once again to that very, very intensive chemotherapy. He said that this is what he did for all of his patients with this type of cancer.
I asked him, “If it’s already spread to my spine, why are we doing a mastectomy? You can’t remove it at this point. If it’s in the bone, every drop of my blood is perfused through the area. It’s already spread.” He said, “Well, you don’t want to look at the cancer, do you?”
To me, whether I look at the cancer is not very important. I worry more about having lymphadenopathy and not being able to use my right arm or my right hand, because I rely on them for my work. Removing the cancer is not a cosmetic issue for me. I am more concerned with what the treatment outcomes would be.
I asked him why he would do this very aggressive version of treatment. Again, he said this is what he did for all his patients. This, to me, is not a patient-centered oncologist. I didn’t find him to care about what my values are. Still, I am sure that he was doing what he felt was the best possible medicine. It just was not the best possible care.
VBCC: Did he ask you what your preferences were? Was this open to discussion?
Ms Berman: No, it was not. This physician believed that his aggressive approach was the best that he could offer. I do not believe that it was done for any reason other than that he believes this is the best that one could do in fighting the cancer. But this is not necessarily the best that one could do in supporting the patient. If my values are different—if I really want to maintain my quality of life—then following his suggestions would mean that I would be stripping down the quality of life that I have now and, according to the research, would not benefit later.
A brilliant physician colleague provided a great analogy. If this were a bank account containing my quality of life, I would be withdrawing everything that is in my account now. If I am doing that knowing that I am going to have deposits coming back in later, that’s a really good plan. But if I don’t believe that that is going to happen, or if the science does not show that I am likely going to get a benefit from this, then I have basically emptied out my account of quality of life and I have nothing to show for it, which to me is not a good plan.
VBCC: What happened then?
Ms Berman: Based on the information that I had and my goals, I determined that the best approach for me was one that would support optimizing my quality of life for as long as possible. I returned to my oncologist in New York, who put me on a different treatment regimen.
I am not foregoing treatment. I am receiving treatment, but that treatment does not have the same level of side effects and the kinds of problems I would have if I opted for the treatments suggested by the other oncologist. My treatment involves hormone-depletion therapy. I am taking a pill at night. I also receive infusions to support the health of my bones.
I am doing very well with this treatment, and the side effects are very much under control. I recently climbed the Great Wall of China. I bike, I ride, and I swim. Life is really quite good, and I think it would not have been had I chosen a different option. People go through those other forms of intensive treatment to get a benefit down the line, but there is nothing in the literature to suggest that I would gain any better benefit down the line. The tradeoff now would be the only thing that would occur, and that would not be a good option to me.
I have been very happy with the plan that my doctor in New York laid out. I am able to speak and write about this on behalf of many people, patients in my situation who do not have enough information to make the kinds of decisions that are really important.
When patients are grappling with serious illness, they need to be able to understand what the trade-offs are for the different treatments. They need to understand what the impact would be on their current health status. Many patients who are grappling with these problems—63% of patients with cancer—are older adults. They have other problems as well, and typically 45% of them have multiple chronic diseases.
A patient who already has other health problems and then cancer is being added as well, that patient must understand both the potential benefits and negative impacts of the different treatment options to make a choice based on the patient’s goals and values. For me, who has no other health issues, but simply because of the nature of the advanced state of my disease, it was very clear what the decision would be.
VBCC: What is missing from the treatment paradigm today for patients with cancer?
Ms Berman: Palliative care must be an integral component of cancer care. Oncologists must understand what the main needs of their patients are. We cannot assume that people necessarily want to pursue a curative approach in a noncurative situation. We often create a mismatch by supporting the patient’s fight, but perhaps the wrong fight. Oncologists need to ask patients what their goals of care are, talk honestly about their health, and understand all aspects of their health. Patients need to understand what the prognosis is for them, what is the likely outcome of chemotherapy, radiation, and all the other curative components of care.
If patients are not given a clear picture of all the options surrounding their care, including the financial aspect, it is very hard for them to be part of that decision and to ensure that their decisions will actually meet their needs.
VBCC: You are clearly very resourceful, and you have access to information that many patients do not have. How should oncologists provide the information that would allow patients to make the best decisions?
Ms Berman: It would be helpful for patients to have very clear information about their diagnosis, which I think most patients do get, as well as much clearer information about their prognosis and the likely course of the disease, which many patients do not get. We then move into even muddier territory, which is what the different types of treatment protocols are that each patient could have, and what would be the likely impact of each treatment on their health now, what would be the benefits later, as well as what the costs are.
We need to give enough information so that patients can participate in making the choice about which path is right for them. In today’s medical record, electronic or paper, there is typically no place to note what a person’s goal of care is. What are we trying to do? What is important to us? The healthcare system treats a diagnosis, but it typically does not treat the patient.
For patients to participate fully in making the treatment decisions—and there’s nothing more important than this—patients and providers need a shared understanding of 3 key pieces of information: the diagnosis, the prognosis, and the patient’s values. Then patients and providers need to discuss the different pathways of treatment. Patients must be provided with basic information. What is the treatment going to do for me and how is it going to make me feel now? What is it going to mean later? And what will the cost be? If we don’t provide this information, then we are denying the patient the ability to make informed decisions.
In my case, the particular choice that I made follows one of the treatment options recommended by the National Cancer Institute (NCI) on their website (www.cancer.gov/cancertopics/fact sheet/Sites-Types/IBC). This option is there, as is the other, more aggressive pathway. The NCI lists several treatment options for a patient with inflammatory breast cancer.
I believe that there are no wrong decisions, only informed decisions. Not everyone should choose what I chose, but people need to be supported so they can make informed choices. Today, healthcare often lacks attention to the patient’s choice and to quality of life in general. Success in cancer care is viewed in terms of 3-month increments of longevity. We measure whether we have a longer life: everything is focused on the length of life. Although those are important data, they are not everything. If we have stripped quality of life from people, and we give them an extra 3 months of bad life, that may not be a good trade-off.
VBCC: What needs to happen to promote a paradigm change in oncology?
Ms Berman: At the beginning of any serious illness, palliative care needs to be an integral partner in the care plan. Typically, palliative care providers are going to be concerned with that person’s goal and with the needs of the family. They are going to be focused on pain and on symptom management, and they are going to be more focused on the person than on the disease. Some people will opt to go for an entirely palliative approach. Other people simply need palliative care as a companion toward that curative care. Palliative care should be brought in at the very beginning of any serious illness.
Today, 80% of large hospitals have palliative care services. Palliative care in the community can be found online at www.GetPalliativeCare.org. On that site, one can choose a state and find local palliative care teams in the community. It does not necessarily have to be in an oncology center; it could be related to other disease states. Whether the care is provided in partnership with curative care or with support of problems that are not necessarily going to be resolved, palliative care should be brought on at the onset of any serious illness.
An article published in the New England Journal of Medicine (Temel JS, et al. N Engl J Med. 2010;363:733-742) concerning lung cancer showed that when palliative care consultation started at the beginning of treatment, patients had better outcomes. They had a better quality of life, and they also lived longer, which was a surprise to many oncologists; they did not understand that palliative care could actually lengthen life.
That reason may be that palliative care keeps people out of the hospital. Immunosuppressed people who go into the hospital can acquire secondary infections. It could be for different reasons, but simply addressing people’s pain and symptoms is supportive of a better and longer life. I am certainly proof of that.
Palliative care is an extra layer of support that helps people manage their pain and symptoms. Palliative care can happen with curative care to help resolve nausea or pain that may be attributed to the treatment itself, not just the disease. Palliative care goes hand in hand with any serious illness that has accompanying pain and symptom issues. It focuses on the needs of the patient and optimizing that patient’s functioning.
VBCC: There is evidence in other fields that when a person feels well or the quality of life is better, people do better overall. Has this been your experience?
Ms Berman: Certainly. If somebody is having very difficult pain and symptoms, it further compromises them. It is detrimental to their body, and it is also protective when people are able to work, to socialize, and to feel well. So, yes, palliative care is extraordinarily important, and it should be a very basic part of advanced illness care. But today it is not a requirement in cancer care. It should be.
VBCC: Has palliative care received enough attention by cancer organizations and by oncologists?
Ms Berman: There is a growing recognition of its importance. I was recently asked to speak to the Institute of Medicine. They are doing a study on cancer and older adults, and this was a big part of their discussions. There is a growing recognition of the need for palliative care to be part of routine cancer care. The American Society of Clinical Oncology has recently issued recommendations to that effect (Smith TJ, et al. J Clin Oncol. 2012;30:880-887. Epub 2012 Feb 6).
VBCC: Is there anything else that oncologists and other team members should consider in this context?
Ms Berman: I have not mentioned that many of the medications and the approaches that we take are not well tested on older adults. We need to do more research in this area to ensure we address the needs of people with multiple chronic diseases, and to recognize that this population is the eye of the storm. Of all patients with cancer, 63% are older adults. This group is doubling and will skew older in the next decade. This is the baby boom generation, with 10,000 people turning 65 years old every day. We are not doing a good job in clinical trials of testing treatments on people with cancer coupled with other comorbidities. This is the norm for cancer. Why is it an exclusion in trials? We need to look at the medications and approaches to manage those multiple conditions and cancer.
When diagnosed with cancer, many people forget everything else and only focus on the cancer. That is not helpful to them. It does not support good quality of life or good quality of care. We need to focus on the needs of the whole human being. Cancer is a part of the picture, but it is never the whole picture.
And last, I would like to take this opportunity to personally thank oncologists, radiologists, palliative care providers, nurses, and anyone involved in cancer care for what they do for people like me. I know that their efforts are focused on doing the best they can for their patients. But the world is changing. Patients want to take a bigger role in their care. It is important to provide more information rather than less; this will give patients the ability to make the choices that are right for them. The one-on-one patient and provider dialogue usually goes in one direction only. Providers need to ask questions about what the patients want. They align care with those values.
We must make sure that every patient is fully informed to the degree that they want information. Some will not want to know. Some may want it conveyed to their families. Your job is to invite the patient into the conversation. This is vitally important, especially with the aging demographic. Many patients are not going to benefit from their treatments. We may be putting physical and financial burdens on them that may not be necessary. Oncologists must ensure that they are informing patients as much as possible so that they make choices that are good for them. This sounds simple, and yet I know that this is a very difficult thing; it is a change for many providers. “Fight, fight, fight” should be “fight, fight, for what?” In my case, it’s going to be fight for quality.