Today, I spoke with Lisa Nash, a 49-year old software manager with a story to tell. Lisa's mother, like mine, died of breast cancer. In 2006, she herself was told that she had an abnormal mammogram, with microcalcifications that were concerning for cancer on biopsy. She found a prominent hospital and breast surgeon who performed a lumpectomy to remove the microcalcifications.
Soon after the surgery, she began experiencing breast discomfort. Though she kept getting reassured that the pain and itching was due to "normal" postoperative changes, she knew that something wasn't right. Some six months later, she found out her surgeon had left 5 titanium clips in her body. This was the hospital's standard of care in order to "mark" the area in case of future radiation therapy--but it was a significant problem, because Lisa is allergic to titanium.
"I was never told that I was going to have titanium placed in my body. When I asked my doctor about it, she said that it was a standard procedure, that's why they didn't have to inform me," Lisa told me. She had also specifically said to her doctors that she was not going to have radiation therapy, something her surgeon appeared not to have heeded.
I don't know about you, but if I'm about to have metal clips be left in my body--for a procedure I didn't want--I would want to know about it. Had Lisa been told about this before the surgery, she would have told her doctors that she actually has a documented allergy to this type of material. She would have reinforced that she didn't want radiation later, so there was no reason for the clips. She would have been able to avoid months of discomfort and uncertainty--and the subsequent disfiguring surgery required to remove the clips.
Lisa's story disturbs me on another level too. Lisa is a professional, highly-educated, and very articulate person. She has had a number of healthcare experiences in the past and is not afraid to speak up for herself. If someone as informed and empowered as her can be blindsided about their treatment, what about everyone else? What can we all do to stand up for ourselves, make sure our doctors listen to us, and involve us as an equal partner in our healthcare?
My next article will provide practical advice for what you can do. Some more tips are on our website. As always, I welcome your feedback and comments on this blog post.