Eight months of treatment. Chemo. Surgery. More chemo. Radiation. I was glad to do it all because I believed that it would make me well. And it did. Since finishing treatment eleven years ago, I’ve been fine.
But when I thought about the possibility of recurrence and metastasis, I was pretty sure that I might skip treatment. Why go through those grueling treatments for only small gains and certain death?
Over the years I’ve realized how wrong I was. I’ve seen women live a long time with Stage IV breast cancer. Some have even reached the place doctors call NED no evidence of disease. They know that they probably still do have some cancer cells floating around somewhere, but their tumors have shrunk enough to be undetectable.
Still when women write in to HealthCentral with a question about the prognosis for a Stage IV cancer, I’m not sure what to write. So much depends on where the cancer has metastasized to and whether it responds to treatment. I know most young Stage IV patients will not be live to be old ladies. Is it irresponsible to give them false hope?
Katherine Russell Rich’s article in the New York Times April 26, 2010 about her life as a Stage IV breast cancer survivor proves just how wrong I have been. Diagnosed with breast cancer 22 years ago, she learned that her cancer had spread to her bones 17 years ago. Her doctor told her she might make it two more years. Two years came and went, and Rich was still alive.
Her doctors came up with a treatment that worked, and when it stopped working, they came up with another treatment, and then another. She went to India and wrote two books while living with Stage IV cancer.
Eventually she learned that not all Stage IV patients die. About 2% live for twenty or thirty years, but doctors do not know who will be in that group. She hopes that researchers will spend more time studying these long term survivors to find out how to help others.
Rich shares her story regularly in a forum for Stage IV patients. She writes about this in her article saying, "I tell the women how deeply I believe there’s no such thing as false hope: all hope is valid, even for people like us, even when hope would no longer appear to be sensible.
Life itself isn’t sensible, I say. No one can say with ultimate authority what will happen with cancer, with a job that appears shaky, with all reversed fortunes so you may as well seize all glimmers that appear."
She explains that when she received her diagnosis, she didn’t want anything spectacular. "All I wanted was ordinary life back, for ordinary life, it became utterly clear, is more valuable than anything else."
I found when I was facing grim statistics that it was important to believe that I was going to be in the group that did well however small it might be. Having read Rich’s story, I am even more convinced about that approach. Now I know what I will write to those women who write in with Stage IV disease: Some Stage IV patients live for years and years and years. Believe that you will be one of them.
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.