Health AGEnda

Can Good Care Produce Bad Health?

Posted in category End of Life Care


For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.

My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important.


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.

What about the millions of older Americans facing a terminal illness or chronic disease?  How can they 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.”  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.

First in a series. See also:

“I’m Dying to Know”

“Death Panels and Decision-Making: A Radio Interview”

“Making Hard Decisions Easier”

“Can the Blind Lead the Seeing?”

“Think Silver–Not Pink–for Breast Cancer Awareness Month”



135 thoughts on “Can Good Care Produce Bad Health?

  1. Amy,

    My heartfelt thanks to you for giving voice to the Campaign for Better Care by sharing your story. You articulate the central message of quality of care, and quality of life. You advocate — along with your colleagues, friends and American families across the country — for the critical importance of listening to patients and those close to them, and to ask about the patient’s goals for care, and his/her values and preferences. You are a champion for putting the patient and his/her family at the center. Your activism for patient- and family-centered care will help many, many others too. We are all in this together, and we are stronger working together.

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  3. Dear Ms. Berman, Thank you for your courageous and impassioned testimony! Your example is an inspiration.

  4. Amy, I’m very sorry to hear the news about your cancer. Your experience with the oncologist sounds truly infuriating. What’s interesting is that if you didn’t know better, it probably wouldn’t be as infuriating (but you would be going down a very aggressive treatment route). I think this happens all the time. Thank you for sharing your personal experience in the name of patient-centered care.

  5. Thank you for your courageous post.
    I want to encourage you with this truth: That doctors know much about medecine but not too much about you and your body. Only you know yourself. Your body may confound both you and your doctors and most conventional medical wisdom. There is much value in the immeasurable human spirit, hope, and happiness and their effect on our health. Your journey will show what numbers and statistics cannot. Glod bless you and I pray for you.

  6. Dear Friends, it’s heartening to read your affirming comments. Lynn, you have spent your professional life advocating on behalf of patients and families at the center of care planning. You are one of my heros. Ken & Ab, as long-time colleagues and friends I thank you for focusing on quality of life, palliation and physical function. Dan, given your work in the long-term care setting I appreciate your kind comment. And Dan, as a Health Outcomes Research Scholar supported by the Hartford Foundation, I have long appreciated your research informing the patient’s decisions. Thank you all for your efforts to inform patient-centered health policy. All best, Amy

  7. Amy: I read your blog post twice…. first, with my head, as an observer and motivated reformer of the American healthcare system
    and second, with my heart, as a “fan” of Amy Berman as she faces difficult personal decisions. As always, you tell the truth — openly, honestly, and with insight. You have laid down a challenge and your call to action will continue to motivate many of us to do the right thing.

  8. Amy, thank you for your courage and your passion for this issue. You speak a truth that is often hidden from public discussion – listening to the patient about his or her goals for care, for that care to be truly “patient-centered” and valuing the quality of one’s life within those care decisions. In all the noise surrounding health care reform, we somehow forget that a large part of the bill deals with exactly this issue: improving the quality of health care with the patient at the center. You are an inspiration. I hope you continue to speak out and blog about your experiences.

  9. Thank you for this wonderful and informative post. I am so sorry for your experience, both with cancer and the health care system, and incredibly inspired by your commitment to make a difference for others.
    May your days be filled with meaning and your time in this world be pain-free and fulfilling. My thoughts and prayers are with you and your family.
    Best wishes,
    Founder and Team Leader
    New England Pet Hospice

  10. Amy, I thank you too for posting this. I pray what Heather said above — that your days will be filled with meaning and your time will be fulfilling and free of pain. Indeed, my prayers are with you. And I will heed your call for us to continue to work toward reorienting our health care system toward patient-centered care.

  11. Amy, I want to echo what others have said, and for modeling what it means to take charge of your own life and your own care. I hope that your example will be shared with other communities of readers as the inspiring example that it is.

  12. Thank you for your eloquent message. Because you are a key change agent for health care nationally, you have a unique perspective on how our systems fails people every day in almost every sector of health care. And your grant making skills have catalyzed efforts to make important changes to improve health and health care. I am sad that you are now a consumer of health care for this serious problem, even if it gives you yet another lever to highlight the opportunities for improvement in the American health care system. I look forward to many more messages from you. Thank you for transforming your personal travails into a “teaching moment” for us all.

  13. Amy, Am very saddened to hear about your health challenge. Your heartfelt post reveals yet again how our health system fails to address what individuals need and want for themselves. It also reveals much about you, your character and generosity of spirit. Let me know how I can help.

  14. I’m forwarding this post to my aunt, who also has inflammatory breast cancer and who also declined “evidence-based medicine” after finding out first hand the significant reduction of her quality of life. Thank you, Amy for sharing your time and energy with us at this precious time. May you have peace and be surrounded by love as you walk this journey.

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  16. First and foremost, I have to say thank you for getting this out there. I’m a RN in a very large corporate based geriatric facility. Unfortunately, I see decisions made for patients all of the time. Nothing is patient centered unfortunately. I would love to help change the ways our health care system perceives as right. Unfortunately, I’m only one person.
    I wish you much love and take your words whole heartedly.

  17. So while we’re all wishing Amy the best and thanking her for her vision and courage, let’s also support this effort by sharing the post through every medium to which we have access (as some have already done); forwarding to friends, family, and professional colleagues; and initiate conversations about what patient-centered care and decision-making is about, including pushing back on those who are scaring the American public into backing off of public policies that can foster discussions about end of life decisions. Thank you for providing this great examlpe for us, Amy. I’m sure everyone here and those not resonding will help to create a village to support you in this important work.

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  19. As a nurse myself, I am profoundly moved by Amy’s insightful words and courage as she reflected upon her healthcare encounter. Why I am I not surprised? It a time when Amy’s life goals should matter most, she is ignored. I teach about nursing’s core values and patient-centered care all the time and yet when I read about Amy’s experience I am so disappointed in our delivery system. We are failing in our policies on how to engage patients and their families about their care decisions. I promise to help my students understand how to have these conversations and to find ways to promote policies that support patient’s real interest. We are with you Amy to ensure your message is heard!

  20. Amy – thank you for sharing your story in a manner that emphasizes the importance of change in healthcare. Your experience personalizes this problem — making it real for those in positions to influence change. It is through the individual experience that movement will occur in masses.

  21. Amy, you are a national treasure. May you continue to have hope and many blessings of time with family and friends. Remain faithful.

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  23. As a nurse in a major medical center, I see this type of situation constantly. Patient centered care has become a term that we don’t really understand or simply choose to change to fit our own interpretation. We all want to be successful and in doing so we feel that we know what is best for our patients and families. I am not only a nurse, but was diagnosed with Prostate Cancer in 2009. I received radiation and hormone treatment, and I am still constantly feeling the effects. I had to give my consent for the treatment, but felt that I was being urged in that direction. Thanks so much for sharing your story. Maybe through this exchange of ideas, we can learn what Patient Centered Care really means!

  24. Amy,
    You embody courage, intelligence, and compassion!
    Love you, Andrea

  25. Amy — I have never read anything by you before, and your eloquence in the face of your health challenges leaves me breathless. I will pray that the Almighty send you a refuah shlemah, a complete healing of mind and body, of soul and spirit, and that you are granted the strength to face the days ahead of you with courage and wisdom. Keep up the fight for patient centered care that focuses on what WE need and not what our doctors and insurers would like us to accept.

  26. My wife had terminal stage 4 cancer. We went to Houston to see what was available. We were told as Amy that the full treatment would be best. We followed instructions and after many problems, she died. No one told us that stage 4 is incureable and we were not given options of living the time she had in a quality way. Instead we were fooled into believeing that there was a chance to defeat the cancer. I wish I had been able to read Amy’s story before this happened.

  27. Dear Amy,

    I am a hospice and palliative care nurse at a major medical center, where patient-directed care is not only the goal but also the norm. Yet far too often, patients defer to what the doctor (or family) thinks is the best course of action, terrified to make a decision that resonates with conscience and soul.

    Your choice of words… “reorient our health care system toward patient-centered care” may be too kind, too compassionate, an approach. Perhaps it is time we demand such care. Ultimately, we are the custodians of our own bodies. And as “consumers” of health care, providers should work for and with us, not the other way around. Perhaps it is time that we all step up to the plate to identify and then to safeguard what is of value when faced with a life-limiting condition. It seems you have done just that. I have no doubt that your impeccable integrity, wisdom, and courage will serve you well. Best to you, Amy.

  28. Amy, thank you for your blog. You are a committed health care professional. And I do mean care.
    I didn’t see any physicians remarks… I wonder why?
    Best to you and your family. Thank you for sharing your experience.
    Pat Klobas

  29. Amy, you represent what makes me proud to be a nurse. You are a shining example for all of us, and you have my deepest admiration and respect. I am holding you in gentle thought and prayer as you face whatever lies ahead, and I wish you Godspeed.

  30. Amy,

    I am thrilled with your choice for quality of life! Most everyone, given the choice, would choose what you have done.

    Now I want to add a word of encouragement as you walk the “quality of life” road.

    You have seen, in your many years of healthcare, miracles of survival
    because someone chose a positive, life affirming choice, having a goal in life and surrounding oneself with those they love (or, as we heard today with Gabrielle Giffords, those loving surround the person). You are such a person. You now have a new goal, proving quality of life leads to the best success, no matter how it ends up! Blessings! Karen

  31. You couldn’t have sent this poignant message more clearly or more powerfully. An exemplary nurse, you continue to heal the people around you.

  32. Thank you for this important message.  I am grateful that you have the strength to share with others the key point that more than one treatment course may be appropriate after a cancer diagnosis.  Aggressive intervention is only one option of many, and it is essential that the options be individualized to each person.  Hopefully your message will reach the physicians who offer those options to patients.  Certainly those of us committed to geriatrics and palliative care will continue to share your message and shake up our colleagues,  You will carry my heart with you along this journey.

  33. Amy, I am so sorry to learn about your diagnosis. If I know anything about you it’s that you are a powerful thinker, messenger, and teacher. Your deeply personal message is certainly a teachable moment for us all, and I thank you for being willing to share it. My prayers go out to you that you may realize your goals and dreams. Best, Eileen Koons

  34. Amy,
    Your articulate voice to an issue we know is at the heart of health care reform is a tribute to you. Thinking of you every day. Love, Elaine

  35. Amy, I just wanted you to know that our home health agency has ALWAYS focusesd on the patient first. Just so you know, we work with doctors who are very concerned about the quality of life for homebound seniors. Together we coordinate care to keep seniors out of the hospital and out of the nursing home. We do our very best to keep them safe at home for as long as possible. We will continue this mission. Thank you very much for your inspiration.

  36. Dear Ms Berman,

    Thank you for this brave and honest post. It is very sad that what matters to the patient is too often the last consideration of the treatment team. Thank you again for thinking of others at such a difficult time.


  37. Amy, you are courageous, altruistic and a very effective advocate. This is no different from your life before diagnosis, but now you are living your principles. I’m devastated that this is happening to you, but not surprised by the unwillingness of experts to “hear” what an informed professional is saying. Teach us how to live. I know I join your friends throughout the network in standing ready to offer whatever best meets your preferences for “quality time”. I wish you well while you savor the good time. Please allow us to pay back by standing by you. It’s the least we can do.
    Virtual hugs, Lisa

  38. Amy, thank you so much for sharing your powerful and thoughtful analysis and personal story. Knowing your commitment to patient centered health care, I am not surprised that you have turned this challenge into an opportunity as a leader to enlighten and shape this important debate. I admire your courage and send you all my best wishes. I have a very dear friend with inflammatory breast cancer and have gone through with her the uncertainties and constant decisions she has faced. Warmest regards,
    Robin Talbert

  39. Amy,

    Thank you so very much for sharing your life with us. My prayers and concerns are with you. I would like to think that your experiences are unusual, but you and I both know that is not the case. Despite the current important emphasis on continuous quality improvement in our health care system, amidst all the jargon of Accountable Care Organizations, Medical Homes, Quality Circles, etc., one almost never finds evidence of that other important aspect of caring, namely Compassion. Would it not be striking if among all the other metrics of health care quality that one saw awards for “Six-Sigma Compassion”! Near the top of a list of possoble metrics in that domain would be thoughtful listening, inquiry about individual goals, and warm and meaningful partnerships between care givers and patients. We have a tendency to blame the pressures of time as an excuse, but there seems something very fundamentally discordant in our systems, something more basically related to our values. You are bravely bearing witness to this issue, and I hope your words will reach a wide audience as seems to be happening. You have always been to me such a paradigm of kindness and empathy in your important work with the Foundation. You along with the other staff have already made major strides in allowing at least one group of health care providers, we geriatricians, to become more sensitized to these issues. The evidence of that success is now seen in every geriatrics program in the country. I hope you will keep up your advocacy and continue to be the kind of leader you have always been. Warmly, Bill

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  41. Amy, having known and admired you for a long time, I cannot tell you how moved I am by the the way you are using your difficult journey for so much good. Your message could not come at a more pivotal time as we seek to empower patients and families in a reformed health care environment – and as the nation debates whether patients should have the opportunityto make important choices based on honest conversations about their health problems and the pros and cons of various approaches to care. This is a courageous contribution to a career of contributions that will become your legacy and it inspires all of us to fight this good fight. My love and prayers, Brenda

  42. Amy, I send you prayers and positive thoughts as you journey. I’m also impressed, as others have said, at how you are turning this incredible life changing challenge into an opportuntiy to do a greater good. I thank you for ‘calling the question’ on patient-centered care. Honestly, the majority of health care providers and the systems they work in don’t have the slightest idea about what that really means. It truly only makes sense when we or a loved one has to engage the health care system in our lives. Many blessings and good days. Chris

  43. Amy, as a fellow breast cancer patient and someone who went through bilateral mastectomies and chemotherapy I applaud your decision given the full spectrum of information you have. At that point in my life I was diagnosed I would have happily done nothing but my family (four teenagers) were not willing to let me do that. You make a critically important point in oncology-GIVE US THE INFORMATION and let us make the decision. All too often in geriatrics the choice is not provided. An aggressive oncologist will persist with treatment or conversely someone may decide no treatment given the patient’s age. We each have to decide what is quality of life for us. I was working a couple of days after surgery and throughout all the chemotherapy as that was quality of life for me. You have choosen life and to live it to the fullest for there is no telling what mind over body can do. KUDOS and we are here behind you and you probably could have a million of the best nurses in the world by your side in a second (as long as you are within our scope of practice!). Keep up the great work.

  44. Amy- first let me say how sorry I am that you are faced with a diagnosis that is both aggressive and time limiting for you.  
    I don’t expect that my response will be popular here but I feel it has to be added to contribute to the discussion.
     First a disclaimer- I am not a physician, I am a nurse.  
    This physician who you saw for second opinion -You say he never asked you about your goals for your care- I believe that and you articulated them so clearly in this article. 
     I can’t “blame” a physician for offering evidence-based treatment for your diagnosis.  I see patients and their families every day asking, if not demanding “fix this, cure this, find a clinical trial, give me an experimental medication, whatever it takes”.  Is it really the health system driving the focus on survival?- I think not, that focus comes from our society and the healthcare systems and practitioners have responded to the demands.  
    On a much less serious level- I have seen this for years with parents demanding physicians prescribe antibiotics for their children’s respiratory infections etc. – Now we have serious issues with drug- resistant organisms.
    My experience working in multiple healthcare institutions on the front lines is that  frequently nurses and physicians talk to patients about treatment options, when appropriate- presenting the  hard facts that these interventions will not change the outcome, will incur cost even devastate finances, increase pain and  make the remaining time in some cases more difficult. We present palliative care, hospice and other supportive care options as an alternative treatment.  The response- many  many times is “I want everything done” from the patient and even more often family members.  Respecting the wishes of those people, the treatments, surgeries and other interventions are carried out.  We now have proliferation of “survival-based” treatments and protocols created by patient expectations. 
    So what is my point here- simply that patient- centered care means very aggressive treatment for some and conservative treatment/palliative care for others.  Its not either/or if we are truly focused on what the patient wants- we have to be prepared to offer both.
     I don’t believe its the health system that needs to be re-oriented, I believe that re-orientation starts with our population and the expectations they have of the American Healthcare System. 
    I support you the patient in your goal of maximizing quality of life, living, working and enjoying your family!  

  45. Amy, thank you for your honest, powerful statement about the importance of quality of life and patient-centered care for both patients and their families. I am deeply sorry that you have been diagnosed with this rare, aggressive form of breast cancer, about which so little is known. My dear friend from childhood also had inflammatory breast cancer. She passed away several years ago at age 59, at the height of a long career in science policy and research. Like you, she was a respected national leader in her field. Like you, she made an informed treatment decision based on her own goals and preferences, although in her case it was to enroll in a clinical trial. She formed a true partnership in care with the principal investigator in that trial, who spoke movingly at her funeral. As a close observer of her journey, which was marked by persistent pain and declining function after each new intervention, I believe that the interpersonal relationships formed with staff at the NIH clinical trial center were the most beneficial aspects of her treatment. Your story should help move quality of life issues front and center in the debate about good health care. With warm regards, Mary Jo

  46. Amy, my prayers are with you—for your continued wisdom and strength to follow the path that is right for you, that you will receive the care and support that you want and need, and that you will have peace in knowing that your courage in sharing this experience and casting a bolder vision for how women face this issue will touch numerous lives and have a profound ripple effect.  Peace & Blessings, Charlotte

  47. Thank you so much, Amy, for sharing your story! You did a beautiful job of articulating the need for person-centered care in our health care system whether it by on the part of physicians, hospitals, home care, assisted living, or nursing home staff. In addition to the education of health care professionals, patients/residents and their families also need to be educated about how to advocate for person-centered care and that it is their right to do so. Professionally, I am on the staff of Pioneer Network which focuses on the advancement of person-centered care in our country and personally I recently experienced the journey of my 88 year old mother through the health care system and finally her death with just a few days of hospice care on August 21, 2010. She had multiple chronic diseases, was a survivor of non-Hodgkins Lymphoma, the drugs for which impacted her immune system so she was very prone to infection. Part of her foot was amputated due to gangrene about a year before her death and in August when she became lethargic, we thought because of another infection, she spent a week or so in the hospital getting IV antibiotics and having yet another battery of tests. The infection cleared up but my mother was still pretty “out of it” when she was discharged from the hospital. We thought she might start eating and drinking when she got home but that never happened. Especially after reading your blog, I wonder if when she became lethargic at home, we just should have let the dying process happen rather than hospitalizing her and treating the infection. She had a living will and a DNR but no extraordinary measures were taken so it wasn’t clear what to do. I think we would have benefited by having someone to consult with in order to make the best decision possible. Thank you for providing the forum for these comments.

  48. Hi Amy, I just wanted to let you know that I am so moved by your courage and dedication to making healthcare more patient-centered and rational through sharing your own personal journey while facing this horrible disease. I do hope you are able to enjoy each day to the fullest surrounded by your friends, family and loved ones. I know that your work and your story will continue to serve as an inspiration to all of us. Thank you for all that you do. Warmest regards, Vinny

  49. I say hurray for you Amy, for taking precious time out to address the need to weigh patient choices be it as serious as cancer, arthritis or simple muscular injury pain, it seems it is becoming an easy way to address the problem without giving thought to possible outcomes.

  50. I am very sorry to hear about your inflammatory breast cancer.

    We put some questions to ask your oncologist in our JAMA article.

    You know what to ask, but these may help others.
    • What is my performance status?
    • What is my chance of cure?
    • What is the chance that this chemotherapy will make my
    cancer shrink?
    • Will I live longer with chemotherapy? How much longer?
    • What are the main adverse effects of the chemotherapy?
    • Will I feel better or worse from the chemotherapy?
    • Are there nonchemotherapy options such as hospice or
    palliative care?
    • Are there clinical trials available?
    • What are the benefits?
    • Am I eligible?
    • What is needed to enroll?
    • What are the likely things that will happen to me?
    • How long will I live? (Ask for a range, and the most likely
    scenario for the period ahead, and when death might be
    • Are there other things I should be doing?
    • Will
    • Advance directives
    • Durable attorney for health care (Who can speak for me if I
    am unable?)
    • Financial or legal issues
    • Family issues (Will you help me talk with my family?)
    • Spiritual and psychological issues (Who is available to help me
    cope with this situation?)
    • Legacy and life review (What do I want to pass on to my
    family about my life?)

    Tom Smith VCU-Massey Cancer Center, Richmond, VA

  51. Amy

    Your courage and wisdom is unprecedented and your sharing will undoubtedly reach many and touch their hearts and enrich their souls. Your work has been so inspiring and you have and contninue to lead the way , helping others change the face and experience of health care. Thank you for being you …. PKL

  52. Amy: Your words and deeply touching experience are of exquisite importance at a time when allopathic medicine often forgets its raison d’être: primum non nocere, beneficence and autonomy. Harm is prevented when evidence-based medicine is able to create a model of medicine whose goals prioritize the patient’s autonomous will for a quality of life, balancing clinical goals carefully with this autonomy as the central issue. Your letter should be sent to every medical school dean in this country – that it might create a much needed forum for our young trainees to ponder, no matter what specialty they choose in their future. Here at Tufts PREP program, we as graduate students, are focused on pain as social and political policy for all stages of life and for every taxonomy of pain … your letter is a poignant example of where we need to go from here.
    May God bless you and may you know how important your contributions have been to this world. Very best wishes.

  53. Amy,
    I was so sorry to hear of your diagnosis. Although we only spent a little time with you, it was clear that your work has made such a difference in the lives of so many older people seeking care.
    Thank you for your poignanat expression of what many people face every day as they interact with providers in this non-patient centered system. This message will cause “ripples across the sea” of those of us who want to provide halth care for people by providing information and opportunity for true discussion about choices. This example of the insensitivity that exists , and about your reflections on it, will help all of us to do a better job every day.

  54. I saw the surfers at Coronado, CA, today.  That reminded me of you, of our meetings at ADGAP, and how you have supported so many of us.  Thank you for your choosing to share this very personal story of your journey, for inspiring us, and for keeping us on track. 

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  56. Amy,
    I wish you the best and am grateful to you for you emphasizing that treatment decisions must be based on the PATIENT’S GOALS after a full discussion about disease and treatment options. We owe it to patients to help them understand what they are facing. If we take the time to understand patients and their values, we are able to really partner them as they make decisions. It is up to us as clinicians, to help patients get what they want to achieve their goals. Many thanks for sharing your story.

  57. Lead on, Amy!!
    I think the next step(s) is to get to the patients/families and help/educate them on the questions to ask to even learn their options, let alone to evaluate each. I thought the material from Tom Smith was definitely in the proverbial ballpark. Perhaps a brochure in every physician’s office? Something for the Oncology Nurses Assn to take on?
    Thank you, Amy, for being out there for us.

  58. Amy:
    Your post is a kick to the gut: I am so sorry about your diagnosis and its finality. You are such a dedicated advocate for improving geriatric care. It’s a small group! You’re needed! Your post is also a kick in the pants: in spite of your illness you contine to advocate. You write about those facing devastating illness and wrenching decisions, “How can they 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.” I passionately believe that this is a crucial game-changer in health care — truly helping patients and families arrive at the BEST decision for them and supporting them at each step in the process. You have taken a deeply personal and harrowing experience and written about it in a way that inspires us all to do better. I am moved by your strength and your leadership. You are now, and will continue to be, in my thoughts and prayers.

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  60. Dear Amy, May God bless you and your family as you go through what must be one of the most difficult of times. Your blog was so moving and I really thank you for sharing your experience with us. You have taught me four things that I wanted to share:
    1. As a patient, it’s important to do my research, have some knowledge of the possible method of treatment and to ask questions that will help me make a proper decision that is suitable to me.

    2. 1st know what my goals are and what I would want to do if ever in that situation. Meaning, what’s more important to me i.e. having a quality of life with minimal pain or possibly prolonging life at whatever the cost even though there’s no guarantee. 3. Because someone is a topnotch in their field, doesn’t mean that they always know what is best for you personally. 4. Stick to your convictions and what you believe is best for you and don’t let them sway you to their way of thinking because they are the “so called” expert.

    Thank you so much for sharing your experience and educating us through your journey. I love you for being you.

  61. Dear Amy–
    It is still hard for me to accept your difficult diagnosis, but your thoughtful and positive approach to your decisions and how to live the remainder of your life is so moving and inspiring. As I read your experience with the health care system, I was reminded of my mother’s trajectory with lung cancer and how critical it was for me to advocate for her to assure she received quality pain care. At the time I also was struck with the concern “What do patients do if they don’t have a healthcare background or a family member knowledgable about health care to advocate for them?” Models of care that bring the patient/family into the center of a coordinated approach to care planning and decision-making are important, but there is still need for strategies to prepare family or significant others for the important role they play in advocacy for quality care and symptom management. Amy, you are in my thoughts and prayers and hoping that you have considerable time to continue your mission to improve the quality of care and life for older persons and to achieve your personal goals. You are the best!

  62. Dear Amy,

    I was heart sick to learn about your aggressive cancer. But awe struck by your courage to face your challenges with great dignity and honesty. You give voice to what patient centered care should be. I was honored to get to know you this year — you are the real deal-smart, honest, compassionate, generous and so funny. I appreciate your sharing the secret to your beautiful hair style with me and your adventure in China. Your heart has many rooms–and sharing your journey has opened them even more and is a lesson for all of us. As someone who works in palliative care your voice and your journey inspire me to work harder to make sure that patient center care is foremost in our health system and that goals of care are discussed and honored- caring can sometimes be more powerful than cure. You are in my thoughts. Your’s is the first blog I read and I will continue to follow you. I am inspired by you!

  63. Amy, as always, your thoughtful and inspiring words in the face of a grave personal challenge are most welcome in today’s climate of false hopes, blinkered thinking, and professional arrogance (not to mention, willful ignorance). Please count on an army of friends and fans to move forward with you through very foggy territory toward what should be very clear goals for all of us which you so perfectly exemplify — putting as much life into our years as years onto our lives. Brava, AMY!

  64. Dear Amy, I am sorry to hear about your recent Diagnosis and I applaud you for verbalizing what every patient needs— to be considered the center of care. One of our roles as nurses, is to support patients in telling a physician what is important to them, inspite of their illness. Hopefully, patients and families will have the confidence, conviction and support to communicate to their physicians what is most precious to them in their remaining months of life. You are very courageous and I wish for you much time filled with special memories.

  65. I, of course, did not need another reason to be proud of Amy, but she is the gift that keeps on giving. Throughout her life, she has been a constant source of strength, love, caring, dedication, and inspiration to all who are fortunate enough to be touched by her. Amy has never been one to take the easy path just because that is an option. Instead, she consistently and very thoughtfully selects the path of good. The path of good for others. As she now shoulders this great personal burden, her thoughts remain on her community and the greater good. She makes lemonade and happily and bravely moves ahead with grace and cheer. She is my personal hero. There are few who live up to her self-standards of personal excellence. Her words of wisdom will undoubtedly help many more than she will ever know. I love my big sister dearly and hope all who read this will send their love to her as well. You are the best sister!

  66. Dear Amy, Your words are so eloquent. You have shown us that we must demand compassion and choice for all patients – if we are ever to fix our broken healthcare system. If love and good wishes could heal, I am certain that you would life well for a very long time despite your disease. We are with you in thoughts and prayers. Thank you for your courage.

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  68. Amy, I hope by the time of this posting you have found support through others that have walked the path of IBC.  Your beautifully written piece is so needed in our world today, but also the fact that there are many that chose the road to aggressive therapy, and are with us 10-15-20 years later.  Yes, there are many.  If I can be of any help, I would be very pleased to talk with you.
    Gods Speed.

  69. Dearest Amy,
    The journey you’ve taken with this change in your life and where you’re going is really under your control. Armed with your knowledge, ability to advocate for yourself as well as interpret the evidence, you’ve come to the best place for you. I am totally in support of your choices and was reminded of an article in the August 2, 2010 edition of The New Yorker by Atul Gawande entitled “Letting Go.” Until I read of the thoughtless treatment you received from a provider who only cared about his goals not yours, I thought the Gawande article should be one of the quintessential pieces of required reading for all of us who say we care about patients. I now will be sharing your story with nursing students as students in my interprofessional courses.
    I also want to add, Amy, that I recall you as a strong advocate for others since your days as a BSN student at NYU through your advocacy for geriatric nursing at the JAHF – attempting to preserve the specialty for the population you cherished. You now inspire all of us to continue advocacy through your eloquence. I will be with you in spirit through your journey, my friend, and will follow your posts on this blog. elaine

  70. Dear Amy,
    I am touched by your courage and your positivity. Doing what is best for you is the key to quality of life. With the loving support you have around you, your knowledge and your expertise I know you will take this journey with your usual dignity and grace. While I am saddened by your health news, staus and prognosis, I am heartened that you have chosen to do it your way. My caring thoughts and prayers are with you. Hugs, Nancy

  71. Dear Amy — As always, you are thoughtful and articulate. You are focused on values and on “the big picture.” These are the qualities from which those of us who are your friends and grantees have benefited so richly. Now, as a result of your illness, we are seeing your bravery. You have made a bold and brave statement. Keep up the great work! Penny

  72. Dear Amy- I echo others’ gratitude for your courage and willingness to share at this time in your life. I have been working for 15 years to communicate to the public the options of palliative care and hospice as well as advance care planning focused on values and goals of care–all elements of a person-centered care approach. There have been times when I wondered if we had become overly alarmed about patients’ wishes not being heard or honored. Then, I too received a breast cancer diagnosis and the health care system swooped me up in its whirlwind of radical surgeries, rigorous chemotherapy, etc. I went along without question and the outcome was positive. But on reflection, I noted how healthcare providers never talked of alternatives, never really gave me a choice. It made me realize how fragile/fleeting the opportunities are to open up the conversation about all options for persons facing serious illness.
    Again, my heartfelt appreciation for your strength in advocating for person-centered care. May your voice be heard.

  73. Dear friends, thank you for your thoughtful and tremendously supportive comments. I agree with Ethel, Diana, Elaine and others that we need action in the education and policy sectors whether it is to inform consumers, sensitize healthcare providers, or implement policy and measures that support patient and family-centered care. For those of you who are going through serious illness or having family experiencing illness, I am sending you much love and good wishes. I hope you will advocate for the care that meets with your goals. When your provider doesn’t care about your goals my best anology is that its like taking trip with a driver that doesn’t know where you want to go. Atlanta or Altoona? It’s your health and your body. I encourage you to participate in your care. Again, thanks for your wonderful comments and get ready for the next installment. All best, Amy

  74. Dear Amy, Your spirit inspired me from our first meeting, and now your dedication to living the fullest life combined with bravely illustrating the need for changes in the healthcare system and the ways medicine is practiced is truly extraordinary. If your courageous journey can evoke awareness of how patient-centered care can spare pain and waste, that will be another important contribution in a life of many contributions. I wish you all the best. Warmly, -Karen

  75. Dear Amy, I have been fortunate to work on a couple of projects you’ve led at the John A. Harford Foundation. Thank you for your tireless advocacy and leadership on issues that so profoundly impact patients’ health care experiences. Your post makes the words of health care reform real, and I hope that it will be circulated throughout the ranks of medical schools and health care systems alike. My best to you, Susan

  76. Amy;
    First let me say I hope you are not experiencing intolerable pain and are doing what you want to do. 
    your recent post and reference to Altoona or Atlanta reminded me of a favorite story learned in my business program commonly referred to as “The Abilene Paradox”. In the story The Road to Abilene- a family all travels to Abilene for dinner only to find out no one really wanted to go but thought the others did so went along with the trip- all were unhappy.  I believe in healthcare patients, physicians and caregivers all think they are going where “everyone wants to go” for care and treatment options.  Only open and honest communication between all will get us off the “road to Abilene” in our healthcare decisions.

  77. Dear Amy,

    With the reading of your blog, my professional admiration for you has grown into a deep personal respect and admiration for your courage and eloquence. Thank you for sharing and thereby allowing your experiences to become instructive and applicable for us all. My best friend from high school is battling IBC. Your perspective on the importance of patient-centered care brings that discussion out of the policy stratosphere and into immediate priorities. You will be in my thoughts and prayers. With best regards,
    Paulette Parker

  78. Dear Amy,
    I am so sad to hear of your diagnosis and left without words to express my sadness as well as my admiration for you. As I struggle with words, I have a vivid memory that reminds me of your incredible strength. In 2005 as a Hartford Nursing Scholar I, along with 10 other nurses from across the country, chased after you through New York City. After a hair-raising tour of the subway system, we raced through Times Square. You instructed us to step off a curb at an intersection and, simply by holding up your left hand, you stopped an oncoming bus and several taxis. We obediently crossed the street as you held back oncoming traffic. Amy, you possess Herculean strength to not only hold back New York traffic, but to change the face of nursing and health care. May you go from strength to strength.
    With deep admiration,

  79. Dear Amy,
    Your compassionate wisdom and unfailing dedication to the best care for elders, in the face of your own devastating diagnosis, is truly inspiring. I will take a deep breath, calm my sense of overwhelming sorrow and vow to turn my awe for you into action for others.

  80. Dear Amy,
    Your compassionate wisdom and unfailing dedication to the best care for elders, in the face of your own devastating diagnosis, is truly inspiring. I will take a deep breath, calm my sense of overwhelming sorrow and vow to turn my awe for you into action for others.
    My thoughts are with you,

  81. I, for one treasure you more then I can put in words, a wonderful soul who touched my heart so deeply. I’m so proud of you Amy, the endless long hours and commitment you put in your profession to make the patient number one.
    Even with the great burden you now carry the dedication drive for quality care, your voice will echo
    toward final patient-centered care system. I will carry your bravery, love for others in my heart always to the end. Shouting, you are the best Amy.

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  83. Dear Amy, we are forever grateful for you as the best project officer ever that inspired full implementation of our project mission and goals and continued purpose – to ensure the safety of elders and persons with disabilities before, during and after a disaster. You continuously challenged us to expand the parameters of our program with additional funding sources. We shared a love for elders and a respect for the givers of care. You are a beautiful person, a lovely soul and you have made a difference in so many lives at such a young age. Thank you, dear friend. LuMarie

  84. Thank you for writing this article. Your profession lends credibility. The same course was recommended for my 80 year old mother. She thought she would live longer if she had the treatment but she didn’t. I can only deccribe the last year of her life as torture at the hands of her doctors. I thought she would have lived at least two years longer and better without any treatment but the doctor told her she needed it and she belived him. Her torture ended on Mothers Day 2006. Good luck and may your voice be heard!

  85. Dear Amy,

    I was so very sorry to learn of your illness. I send you my prayers and emphasize with you and your loved ones. I remain impressed by you, your professionalism, and your mission based drive to help others. Even now in light of such news, you express so eloquently such critical ethical and moral points. I found your expressed health care experiences thoughtful and unfortunate. They show that we need to add “care” back into ‘healthcare’.

    Recently while in a staff meeting we discussed quality, what we thought it was, and what our patients may think. We settled on that quality could only be defined by the individual (patient). That our job as health care providers is to provide information and support so that the individual ccan make their informed consent with the input of those that they wished to include.

    Amy, I am grateful to have had the experience working with you, our FHCA grant, and to hopefully have reached out to the Elders and health providers working with those Elders we hopento touch. I promise to continue to working fornthe betterment of this population to give them a voice and most importantly a choice as without choice what do we have.

    My thoughts and prayers include you and yours. If I may serve or do anything for you Amy please do not hesitate to call me 727.744.2021.

    Sincerely, Robin Bleier

  86. Dear Amy–I was so sad to learn today about your diagnosis. But I was so inspired and gladdened by your eloquent initial post and the way you have made your own experience a forum for communication and education towards better care for us all. It is sobering to realize that most patients would not have the knowledge and resources to get beyond the recommendations of the doctor who gave the 2nd opinion. I read the whole continuous blog from beginning to end and thought, what a great contribution you are making–to add to all the other cntributions you have made to health care practices and policies. Thank you so much for doing this. You are in my thoughts and prayers. Rosalie

  87. Amy, unfortunately the physician in Philly saw you as nothing more than a widget. An inanimate object that he could churn thru over utilization of healthcare services and make money. This is harsh, I know. But, the dirty little secret that no one in healthcare wants to speak about is- one persons health misfortune is another heathcare providers fortune. I don’t even believe that this physician realizes this…… he’s not thinkin of a new sports car when he advises his “aggressive approach” it’s ingrained in him from years of practice and years of quantitative medicine verse qualitative. I’m a nurse like you and offer condolensces but more importantly a wish that your life will be filled with joy and hope. I am not a religious man but I don’t recognize the word incurable, perhaps because I have witnessed miracles!

  88. Dear Thoughtful Courageous Amy,
    Thank you. We keep our stories of the suffering of our loved ones who were denied the truth buried. We allow the Medical Industrial Complex to pour money into every new treatment and torture.
    Mom had lung cancer with mets to brain(after surviving multiple myeloma for nearly 15 years) and she was told that outpatient surgery to freeze her vocal chord would allow her to continue to talk. What they didn’t tell her that her preop chest xray “looked like a snow storm” to quote her radiation oncologist, who I contacted after her protracted hospital stay post vocal chord procedure because she couldn’t keep anything down, and her oncologist was too busy to return my calls. I refused to put her in an ambuvan and ship her to the waiting room at the “Cancer Center” only to be told by the oncologist, who never sat down and actually had a conversation with her, that there was no more that could be done. Gratefully the radiation oncologist had established a relationship with mom-many people had, (she founded the first multiply myeloma support group in Northern CA) (long before the internet) – he said I’ll come to her apartment. He came, told her that she had 2 weeks to a month left. She said “thank you.” She was furious that precious Medicare dollars had been spent on surgery and hospitalization that were unneccessary. She was angry that she had gone through an unneccessary surgery and was still so very sick post discharge. She asked to spend her final weeks (it was only 8 days) at the Zen Hospice Guest House in San Francisco. There she was visited by countless friends who sat with her, prayed, sang and held her in their hearts.
    How different would it have been if 6 months earlier when I asked her primary care physician for a hospice referral and he said “no, there’s more that can be done” or 3 months earlier when the preop chest xray came back – she had been told the truth? She would have been able to say: thank you, I love you, I forgive you, please forgive me and goodbye to ALL of her friends. I’ve since spoken directly to her primary care physician, I wrote the medical board regarding her oncologist, I’ve thanked her radiation oncologist, I went back to school and did my dissertation on access to hospice care in California, I’ve joined the board of Zen Hospice Project and I’ve become an advocate for completion of “POLST” forms- Physicians Orders for Life Sustaining Treatment which require physicians to have conversations with patients about the seriousness of their illness and what choices they have. In my work (designing and administering health benefits for county employees and retirees) I am including requiring advanced directives and POLST offering as a provider “performance guarantee.”
    Amy your experience reinspires me, to continue to advocate for patient centered care – your courage to share your story is changing the system of care that prioritizes protocols and profits rather than people. Thank you, thank you, thank you. with great regard, Catherine Dodd PhD, RN
    May you be be happy, may you be at peace.

  89. Editor’s note. The comment below makes inaccurate and unfounded claims about the motives of Amy and HealthAGEnda. And it is wrong on the facts and in its interpretation of the facts. In the interest of stimulating greater public dialog, we are, of course, publishing it anyway. I hope that readers will see fit to address these errors in further comments.

    Amy: You are promoting the agenda of the Compassionate Care organization which will end up being compulsory and not voluntary. You nor any other patient is currently compelled to accept the aggressive treatment for cancer suggested by one doctor. You were practicing (although maybe not wisely) patient centered, palliative care choice in treatment – which is to say, no treatment.
    But, to make palliative care the mandated form of treatment for everyone is not best for everyone. You are accepting Obama’s make the benefit fit the cost mantra and I say that treating a human being with all the care currently available is the most humane way to show compassion for ill and terminally ill human beings.

  90. Dear Amy, 
    First, I am sorry for your health challenges but gratified by your courage. In you shoes, I would think the same way but rarely does someone speak about the option to live fully rather than live longer. Thanks for doing this, and hugs,

    Maureen Bisognano

  91. Camille, on one hand you say “to make palliative care the mandated form of treatment for everyone is not best for everyone, then say…. “treating a human being with all the care currently available is the most humane way to show compassion for ill and terminally ill human beings”. So you don’t want “palliative care” mandated but you want to treat with “all the care currently available” and state that this is “the most humane way”. Humane for who? Is this what you want to mandate? How about allowing choice. FYI there was no dealth panel option in the new health bill. Educate yourself, maybe volunteer in a palliative care program and maybe then you could at least make an intelligent point and not contradict yourself!

  92. Dear Camille,
    As a special valentine, today I had my three month check-up and I seem to be doing well with the medication I am on.
    Yes, I am choosing a treatment and by no means forgoing all treatment. I did not choose the aggressive path that would likely reduce my quality of life without any hope of cure. I think it’s a good choice as an informed healthcare professional. Further, I strongly believe that well-informed patients–coupled with providers that listen to the patient’s values and goals–together produce good care. In serious illness there are serious choices to be made. I made mine and am ever grateful to my healthcare team. I hope if and when you or your family experience serious illness you recieve care from people that focus on your goals and your values.

    Happy Valentines Day, Amy

  93. I’m glad to read that you had an encouraging check-up. Inflammatory breast cancer (IBC) is a challenging diagnosis. Thanks to your experience you were more prepared than many patients to be your own advocate. Unfortunately many patients are so frightened they don’t even question the treatment plan and don’t consider options. I think you summed it up eloquently when you said, “I strongly believe that well-informed patients–coupled with providers that listen to the patient’s values and goals–together produce good care.” I was diagnosed with stage IIIB, IBC in 1994. I opted for a very aggressive treatment regimen because I thought it was best for me at the time and was fortunate to get through the treatments with fairly good quality of life. I continue to hope that we will move away from “one size fits all” treatment to patient focused treatments that look at the whole patient, not just the disease. Best wishes on your continued treatment and thanks for your thoughtful comments.

  94. Dear Amy,
    I left a message earlier but the blog ate my post! I am sending you a big long hug. 🙂 I know you are strong and will do what you can; hopefully you are able to connect with others in the same situation as you.

  95. I’m also a health grantmaker, but I’m headed to medical school in a few months. I’ll always remember your story, which I’m certain will make me a better physician. Lessons learned: 1) listen closely to patients to hear both their needs and their wishes, 2) Quantity of life is important, but quality of life is paramount. I’m happy to hear the course of treatment you selected is working well for you. I wish you the best of luck with both your health and in your journey.

  96. Please note that Amy has followed up with a second blog in this series, “I’m Dying to Know,” at

  97. This post was featured in Grand Rounds at the Covert Rationing Blog on February 22, 2011:

  98. Dearest Amy: Just seeing this now and am shocked about the diagnosis and in awe of your response and ability to articulate all that is happening to you. I will share your blog and story and keep you and your family in my prayers. Thank you for including your many friends and colleagues on this very personal journey. Sending a virtual hug and many good thoughts. Love, Chris

  99. Dear Amy, my specialty is in decedent affairs and I work with the families of patients who have died – every day. When I review my patient charts and talk with those who are left behind, I witness the lost opportunities for healing relationships, closing life with dignity, and preventing pain in all it’s manifestations. I see the outcomes of aggressive care and the needless suffering that comes with “good medicine”. You are remarkable. Your kindness and passion is inspiring. Thank you for your bravery and devotion to others. Love and Peace to You, Liz.

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  102. Hi,
    I had LCIS in 1992 and invasive ductal carcinoma in 1994 Stage 2A in 1994 . I was treated for this at City of Hope in Duarte, Ca. This was a pretty positive experience.
    Then in 2006 I had DCIS in the left breast. At that time I opted for a double mastectomy because I didn’t want to see what would happen in 2 years. This experience was a nightmare. I met several rude and uncaring people and I was left with a horrible looking chest. (my mother who had a radical mastectomy in the 50’s had a smooth chest as did the patients that I took care of (I also am a nurse.) My chest is mangled and ugly. The last words that my surgeon said to me was “You think that I messed up but I don’t!” I realize that my cancers were not so serious – ( the oncologist here told me that my first and third cancers were fake cancers and only the second one was real!)
    It has been 5 years and I expect to look like this for the rest of my life. When I opted for a reconstruction later I was told that I am not a candidate for reconstruction,
    Sorry to put in such a negative posting but that is how I feel!

  103. Amy: As a physician, personally struggling with the after-effects of breast cancer therapy, I can totally identify with your perspective on the receiving end of health care in America. I assume you realize the false premise of your expectations of a “pre-eminent researcher/clinician” with expertise in your type of cancer. The reality of medical training and hierarchy in our country is that physicians who become “pre-eminent experts” are not likely to also be excellent clinicians. By definition, those who become entrenched in academic medicine and research are typically driven to pursue intellectual/scientific ideas, but are not necessarily empathetic individuals who are skilled with hands-on clinical practice, or who even enjoy it. Your expert was clearly knowledgeable about your specific cancer, and determined to provide the most thorough and current regimen to attack the malignancy, with the focus on the disease… not the practical reality of your life. This is an unfortunate commentary on our system, but you were intelligent enough to garner a second opinion and to be able to distinguish between the advice that was relevant to your own life, vrs. the academic perspective. I wish you well in your personal battle and your valiant determination to use your time to the fullest.

  104. Dear Amy: Thank you so much for your courage in questioning ‘the system’ and sharing your experience with other women with breast cancer. I am a resident of the Philadelphia region and when my own cancer was diagnosed and I was looking for a medical team had heard from a friend (breast cancer survivor) about a top research physician with no heart, no bedside manner, and a one-size-fits all approach to treatment (could it be the same doctor?). Also that he is only really interested in patients who will further his own objectives for research. It is truly sad that the premier institution that he works within allows him to continue with such a narrow approach. Since I was forewarned I chose to travel 2 hrs. south to one of the nations top cancer hospitals in Baltimore – there I met with a breast cancer team that patiently explained my options, treated me with respect, and supported my decisions – even though I chose a less traditional path. So many times I have been asked ‘why do you drive to Baltimore when you are so close to Philadelphia?”…. if only all women could experience the difference of a medical team that really listens.

  105. Amy,
    As a breast cancer patient currently undergoing treatment, I have found that even when you ask all of the right questions, the possible side effects and downsides to any treatment are downplayed prior to treatment and marginalized during treatment (when they DO occur). I have also run into confusing and conflicting information regarding treatments, as well as confusing statistics for cure rates and percentage increase of cure with each treatment. A huge factor missing in all of this care is mental health care for patients. How about having a professional present during the initial visits, while waiting for radiation, during chemo treatments, etc., …? This would be so much better for all involved instead of our million questions to each other as we wait around in our hospital gowns. I grew up in a medical family and am surrounded by doctors on all sides. I have a good handle on terminology and can read abstracts and understand statistics, yet at this point I feel as though there is no clear answer and no way to even start to get one. I was recently told by one doctor to just choose to do it (a particular treatment) or not and then never look back. Seriously? What intellectual can do that?
    BUT, … I am lucky because I have unrestricted access to health care.
    I am lucky because I have great insurance.
    I am lucky because I am surrounded by family members who are doctors and help me talk through this.
    I am lucky because I had an easily detectable, small cancer lesion with a low risk of recurrence.
    Please contact me and let me know what I can do to help further your vision for Patient-Centered care. You are an inspiration. You see beyond your own circumstance and want to empower others who are facing the diagnosis and treatment process and hopefully improve that process in the future.

  106. I am beyond impressed with the open and honest comments from our bloggers facing serious illness. We are soulmates. In fact, everyone reading these comments will at some point experience these issues firsthand unless the patient—and not the disease—becomes the center of health care’s focus. Am sending supportive thoughts to those of you experiencing illness. Joan, I know that not everyone is a candidate for reconstruction. Your comments cry out to surgeons to care about the look of the mastectomies they perform. For the one in seven women that will experience breast cancer, they deserve this much from their surgeons. Ann, Susan, and Wendy, its a sad commentary that we had similar experiences with care that did not focus on our goals, providers that did not fully inform, or stories made us choose to go elsewhere. Since 63% of cancer patients are older adults, this must be addressed because the frail and homebound may not have a choice.

  107. Hi and congrats to Amy,   Wow. I am so impressed and honored to meet you via cyber space.
    I am a 10 year 2x survivor.  My experience with my own masectomy and tram flap reconstruction was very positive.  I know it is not that way for all.  I have to share this– until I reached the 10 year mark,  I did not feel the way I do now.  I also felt (at times) the treatment was worse than the cure.  I chose to use music as one of my healing therapies…prescribed by some doctors.   Will explain.  Would like to chat further.   AGAIN…good work, and only happy and healthy future.  Laura

  108. Terrific letter to the editor of the Wall Street Journal today offering the perspective on palliative approaches vs aggressive treatments. Hopefully, it will support the effort for people to consider quality of life in making treatment decisions. Good for you and for everyone facing this challenge.

  109. Dear Ms. Berman, I am a nurse and a cancer survivor myself. It made me very sad to learn about your disappointing experience with our “top-notch” doctors. It was disappointing but not surprising. I admire you for making such difficult but right decision about your health management. I took your story very personally. May I suggest you a site that might sparkle your interest and be possibly helpful if you give any thoughts about alternative, non-aggressive cancer treatment.
    I hope you find few minutes to watch this video. I admire your courageous attitude. Naira Zargarian, RN, FNP, PhD student.

  110. Hello, it was very disappointing to read Camille’s entry about current medical practices. She says,”You nor any other patient is currently compelled to accept the aggressive treatment for cancer suggested by one doctor”. In a way, yes, nobody is compelled to accept the aggressive treatment for cancer, but guess what? If you decide to chose a different, less-aggressive treatment for cancer, your medical insurance is not going to pay a penny of YOUR own money towards that treatment, and you either accept the treatment ot do what Amy has decided to do, which brings us back to Amy’s point: our approach needs to be patient-centered. I did not see any “mandated palliative care” suggestions in any of Amy’s comments. I think Camille needs to see the difference between patient-centered approach, which is simply to ask the patient what THEY want to get out of this treatment, and “treating a human being with all the care currently available …” which technically should also include the patient. So, either way, Amy is right. Patient should be the one to choose the treatment that is right for him. And doctors should be there to support a patient.

  111. Very moving. Amy, I’m glad you made the time to write about your experience. Patients should be able to decide what treatment to go with, but some are so scared about the aggressive treatments and would choose the easy way. But this decision can cost their lives. I know a few cases that preferred to choose natural treatments, but in the end, they did not work. If the cancer is advanced, aggressive treatments work the best.

  112. Manya, you raise an interesting question when you suggest that aggressive treatments work best. This assumes that one is in a curative mode. What about when there is no cure? The treatments are truly debilitating. There is a delicate balancing act. How hard should I fight to delay death? How hard should I fight to maintain my function and quality of life? There is of course evidence published in JAMA suggesting that the palliative approach extends life. I believe that patients should be better informed and make decisions based on their goals. You have heard my goals and my decisions. Aggressive treatment is not my choice. And by the way, I am happy to report that at eight months am still pain free and doing well. Every day is a blessing. Manya. I am not sure I would say that had I chosen aggressive treatment that would not offer hope of a cure.

  113. Amy, When teaching this morning at our Hartford FLAG program, I had no idea about your story. Thanl you for sharing your blog with us. My heart was wrenched when I read your story. I can’t imagine all of the issues you’ve had to cope with and you clearly exemplify the importance of knowing what the patient wants. My husband was diagnosed with kidney cancer 5 yeears ago and it had metaticized before it was discovered. I firmly believe he is the one who needs to make choices about what will happen, but it isn’t always easy. His background is engineering and he makes decisions about his health similar to solving an engineering problem – logical, weighing the odds and deciding. He immediately filled out an advanced directive clearly outlining his wishes and made funeral arrangements before telling me about it. I find some choices hard, but I absolutely respect his wishes. We’ve been fortunate to have 5 years since his diagnosis, however, with multiple surgeries, I’m not sure they can cut out much more. Over time there are newer medications that continue to evolve which may be options if needed in the future. However, he will weigh the odds if the time comes to rethink about whether the side effects justify the treatment. Living with cancer is a challenge and a blessing. I’ve learned to value our time together and not let little things become big things. Thank you for sharing your story

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  116. As a MSW Graduate student this divulgence of your onerous plight will be the premise to bring change to the healthcare system on a macro level. Thank you for sharing at this difficult time.

  117. Amy – thank you for the April 2012 Health Affairs Article, an RN who does complex care management and palliative care at Kaiser Redwood City just shared it with me and I went back to find your email from last year. When I think of all you continue to contribute I am reminded of a quote by Margaret Sanger: “to truly live, one must put one’s convictions into action” you are truly living, thank you. be well, Catherine Dodd RN

  118. If you go to a butcher you get meat.If you go to a surgeon you get a mastectomy. I f you go to an oncologist you get chemotherapy.
    I had carcinoma of my larynx, even though I had stopped smoking 30 years ago. I asked my ENT what he thought he would do if he had this disease. He said radiation.I had radiation and after two years the cancer returned. I then had a laryn

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  120. I then had a laryngectomy with the placement of a Transesophageal prosthesis “TEP”. I am fine back to work and seeing residents ,students & patients every daY!!

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  122. Dear Amy, Thank you for sharing your story. Your telling of your second opinion is so maddeningly typical: big, expensive guns with major life changing side effects all to live a few weeks to months longer, miserably. The denial about side effects of chemotherapy, surgery and radiation treatment is a tragedy, leaving millions with chronic pain or brain dysfunction. Thank you for raising these question about life, death and cancer treatment.

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  125. According to the it sounds like your cancer is in fact treatable and survivable? I hope you have read the research and know that the more recent numbers are even better. – “when women are treated with neoadjuvant chemotherapy, mastectomy, adjuvant chemotherapy, and radiation therapy, their 5-year disease-free survival ranges from 24 to 49 percent.

    One long-term study found that 28 percent of women with inflammatory breast cancer survived 15 years or longer after they were treated with multimodal therapy.

    • I greatly appreciate your thoughtful sharing of the data. It is part of the same body of research that I based my treatment decisions upon. On average the five-year survival for Inflammatory Breast Cancer is 40%. And if diagnosed at Stage IV the prognosis drops to 20%. The research you presented does not compare with approaches that focus on maintaining quality of life. And there is no cure. All of this is on the same website. Can I choose an aggressive approach. Yes, of course. Will it help me live longer or better? Nothing suggests so. But when a breakthrough occurs I would be delighted if you shared. Care has to factor in values. I am a quality of life person. Thanks so much for caring. Warmly, Amy

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  132. Thank you for sharing your valuable information.this information very useful for online learners

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