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.