One of the on-line groups I belong to is buzzing with indignation about an article, “Living Life In My Own Way And Dying That Way As Well,” by Amy Berman in HealthAffairs. In the article, Berman describes her decision to skip chemotherapy, radiation and/or surgery as treatments for her Stage IV inflammatory breast cancer (IBC). No one in my group quibbles with Berman’s right to forego aggressive treatment. They agree that the quality of our lives is more important than the quantity of years we survive.
However, many thought Berman’s description of her diagnosis as the "worst case" is misleading, and they worry that it might make other women decide to forego treatment. Many of these women go to work, take care of their children, and pursue their hobbies while on chemotherapy and other aggressive treatments for their Stage IV IBC. Sure, their quality of life would have been even better if they had never been diagnosed with cancer, but given their options of increasing pain leading to death without treatment versus stabilizing or even shrinking their tumors with treatment, they choose treatment. They are often surprised at how well they manage it all.
The on-line discussion and news this week from two friends dealing with cancer has me thinking about the issue of quality of life versus quantity and the decisions we sometimes must make. In a sharepostabout four Stage IV IBC survivors, I concluded that these women "find out about the latest treatments, consult with doctors who are willing to treat their disease aggressively, find support from faith and family, and then they continue with the activities that bring meaning to their lives for as long as possible. These days ‘as long as possible’ is longer than it used to be."
These four steps seem to me to be a good guideline for making decisions about whether to pursue aggressive treatment for any life-threatening illness.
Find the latest information. Information is the first step in decision-making. All too often if a disease is rare like IBC, a local doctor may not have the best information. I’m still indignant when I remember a doctor who looked at me like I must be mistaken when I told her that I was an inflammatory breast cancer survivor. "But that is always fatal," she told me. At that point, it hadn’t killed me in ten years, and I know quite a few other long-term IBC survivors.
People can view statistics differently. It is true that about 60% of IBC patients die within five years. And if you break down the stats even more carefully, most of those die within three years. So why bother to find the latest treatment if most people die? It all depends on your point of view. My attitude when I heard the stats for my disease was that if 40% can survive, I want to be in the 40%, and I am willing to do what is necessary to get in that group.
As I learned more about the prognostic factors within the overall diagnosis of IBC, it turned out that I was on the "wrong side" of every one, so I suppose that my chances of living five years were actually lower than 40%. This month is the 14th year since my cancer diagnosis. Thank goodness, I had doctors who encouraged me to believe that I could survive and thrive despite my prognosis.
Reliable sources on the internet can help a patient know what is available. The NIH website provides information about different kinds of cancer and lists clinical trials that are available. For IBC, I go to the Inflammatory Breast Cancer Research Foundation for the latest in research. The shareposts at HealthCentral often feature recent research findings, and the question feature allows readers to get answers from well-read breast cancer survivors like PJ Hamel and myself as well as from other readers who have similar experiences.
Find the right doctor for you. For Berman, the right doctor was the one who agreed to treat her with palliative care treatments designed to keep her comfortable. Her article suggests that too many doctors push their patients into aggressive treatments even when those treatments will not extend their lives significantly. She may be correct. I have known elderly people on chemo who would probably have been better off with palliative care. However, over the years, I have read all too many stories from Stage IV breast cancer patients who had to fight to get aggressive care. The first doctor they saw told them, "You have a terminal disease. Go home and get your affairs in order."
Many of these women gleefully report that they are now two, five, and ten years past the "expiration date" their first doctors predicted. They found a doctor willing to treat their disease aggressively. Some of them are happy to say that they are NED, and turn this medical abbreviation that stands for No Evidence of Disease, into the acronym No Expiration Date.
Find supporn as many forms as possible. Living with cancer is not a do-it-yourself activity. My friend Beth sent out an email this week about her latest cancer news. In it she talked about the incredible support she has had from family and friends. Beth endured a leg amputation for her rare form of cancer and chemotherapy when it spread to her lungs. Last summer she told me that if the lung metastasis grows, she will probably not have more chemo. Quality of life is too important an issue. In her email, she was able to report that the lung tumor is actually shrinking and that she continues to improve her mobility. It seems that the first set of chemo was effective.
Another friend asked for prayers for her family as her daughter undergoes extremely aggressive treatments for a recurrence of lymphoma.
Talk to anyone who lives with cancer, and they will tell you they couldn’t cope without support. Some people have incredibly supportive families. Others have families who cannot or will not help them, and they turn to networks of friends, on-line support groups, or professionally organized support groups in a hospital or counseling center.
Help with rides to the doctor, meals, or babysitting is one important part of support, but faith support seems even more crucial. For some people, this is through an organized religion. Scripture and prayers get many people through their darkest days. Other people have a less formal faith, but a sense of fate gives them peace that they will find the energy they need to cope. Music, nature, laughter form emotional support for many.
Find activities that bring you joy. The sad truth is that most people with breast cancer metastases will not get to be little old ladies. Cancer will kill them prematurely. The many women I know living with Stage IV breast cancer do worry about dying and leaving their children before they are grown. Then they decide to make every moment meaningful. They ride horses, play tennis, go to work, or take a special trip with their family.
They strip their lives of the unessential and do what is important to them. I am constantly amazed by their courage and grace. No one can know which of these women will be the ones who are still alive five or ten years from now. Some of them will, but I will cry when others of them die within a year or two of diagnosis. Each moment of life is a precious gift, and I cherish knowing all of my cancer friends for however long we have together.
There is a time to call Hospice, and many people wait too long to make that call. Palliative care and hospice care can relieve the pain and suffering of the last stages of cancer. A frank talk with the doctor about how aggressive treatment will affect your quality of life and about how much longer it is likely to extend your life is vital to informed decision-making. Now that I know so many long-term Stage IV survivors, my notion of when it is time to stop treatment has changed. No one knows your "expiration date." Only you can decide what you are willing to do to try to extend it.
Berman, A. (2012). Living life in my own way and dying that way as well. HealthAffairs, 31(4).
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.