For this blog, I would like to take a brief break from my own medical journey to discuss that of someone who has become one of my heroes. While in my car several years ago, I heard a radio interview with a remarkable woman—someone I would love to meet someday—someone whose medical decision-making is blazing a new path for all of us.
Amy Berman was diagnosed with inflammatory breast cancer in October 2010. Inflammatory breast cancer (IBC) is very rare—only a small percentage of the breast cancer cases each year. IBC is not helped much by early detection—usually showing up as breast redness and swelling. In addition, by the time it’s detected, it has probably spread.
While Amy Berman went through the grief and fear that accompanies a serious diagnosis, she was also a nurse who worked as a geriatric care manager. She immediately pulled from those two areas of expertise to make her decisions about how to handle the news of her diagnosis.
As a nurse, she explored all her options. She got a second opinions from inflammatory breast cancer experts. She gathered all the research and all the facts. Yet, the cold, hard truth persisted—there was no cure and there was no guarantee that extremely, harsh treatments would guarantee her more than a few extra months of life.
Then, drawing on her experience as a geriatric care manager, she knew that end-of-life decisions meant devoting a great deal of her days to difficult treatments and spending time in medical facilities while feeling terrible all the while.
Her personal values were her family and spending as much time as she had remaining, cherishing every moment with them. After that, her career with the John A. Hartford Foundation was extremely rewarding and she wanted to continue working there. She was able to achieve both—not rejecting treatment, but instead relying on palliative care to stave off all symptoms, keep her feeling well and help her maintain what was most important in her life.
Now, five years later, she is still enjoying her family, her career and has managed to travel abroad. I even saw an online photo of her jet skiing around the Statue of Liberty one summer. She has become one of the very, small percentage of IBC patients to have survived this long—and her case will definitely be watched by the experts in the field.
At the same time, she realizes that cancer is an erratic disease, hard to predict as the diseased cells that have malfunctioned don’t go by the same rules as the other more well-behaved cells in our bodies. She knows that she feels well for now and values the present day. She also advocates for others to rely on decision-making tools such as “Choosing Wisely” to help determine the next steps after a major diagnosis.
Most of all, a blunt, honest assessment of her situation was vitally important. Knowing that she faced a diagnosis that meant her days were limited was her impetus to getting all the facts on the table. Amy Berman credits an end-of-life discussion with helping her prioritize her values and helping her find peace with her decision. It also helped that being a nurse, she understood the complicated options that were given her.
Her example inspires me every day as a patient advocate to work with my clients to help them live their best possible life, no matter what their diagnosis might be. I hope to someday to meet her to tell her how courageous I think she is. May we all be as brave, too! It’s the only way to put the “care” back in health care.