A few days ago, I shared my story about doctor-patient communication in this post: When A Patient Asks: Why Won’t Anybody Just Talk To Me?”
Apparently, my tale, which began with a description of my surgeon striking a nerve, well…struck a nerve. I have received feedback from many sources, and it illustrates a point I noticed when I first started writing the piece back in May. On this topic, almost everyone has a story. And some of them are doozies.
After I posted a link to my story on Facebook, I received many comments from friends and family acknowledging the importance of talking frankly with your doctor, and noting how hard it can be. One friend offered a story about her fiancé who, while in remission for lung cancer, was erroneously told by a resident that his cancer had returned, only to find out it was actually a virus.
Another friend suggested that one of the areas where doctor-patient communication could be most improved is childbirth, where complications involving anesthesia and unnecessary C-sections require communication over an extended period of time.
The most outstanding Facebook comment came from a middle-school acquaintance with whom I have had no contact, outside of social media, in over 20 years. Kerry sent me a message explaining why my piece rang true for her. A few years back, she had been diagnosed with a rare and complicated brain tumor. “I consulted with 5 neurosurgeons before I found the right one because of the lack of information and the frustrating communication,” she wrote. “Finding a good rapport was part of finding the right surgeon.”
It may seem like overkill to be that picky with a surgeon when time may have been a factor. But further messaging revealed the reason for her meticulous neurosurgeon auditions. Kerry explained that the surgeon she finally chose, at the Mayo Clinic, “took into account my entire life, my age, the fact that I was a single mother, an artist, my preference, etc., when we evaluated the risks of surgery vs. waiting…The more common complications would directly impact all of those aspects of my life.”
“Knowing that he was as concerned as I was made a monumental difference,” Kerry wrote.
Perhaps my proudest moment in this process has been connecting with an amazing young lady named Tatyana. Tatyana’s mother, Sylvia, posted a comment here on CommonHealth, saying her 15-year-old daughter had recently gone through the same diagnosis and treatment that I experienced six years ago. She asked if I’d be willing to connect with her daughter and chat about what it was like.
So Tatyana, Sylvia, and I recently sat down over Panera pastries and talked about Dermatofibrosarcoma Protuberens (DFSP) and our common experiences. Not only did we have the same diagnosis, we had the same surgeon. And like me, Tatyana was sent home with a large hole in her body. For a young girl, a leg wound like that would be traumatic enough. But Tatyana’s DFSP wasn’t on her leg. It was on her abdomen.
So Tatyana sat at home with a baseball sized hole on her belly for two days in enough pain to make her vomit, which then created even more pain, which made her vomit again. “I wish they had admitted me to the hospital after that surgery,” she said.
Unlike me, Tatyana was stitched up by a separate plastic surgeon. Also unlike me, Tatyana was hospitalized for days after closure, and her cavity was regularly vacuumed to prevent swelling and aid in healing. And unlike me, Tatyana says she had no problems saying all the things she was thinking.
“I’ve always had no problem asking questions,” she said.
Despite the differences, Tatyana and I bonded over the striking similarities in our experience. We both felt like our surgeon rushed through our appointments and didn’t feel comfortable with human conversation. We both feel uncomfortable with our experience falling under the umbrella of “cancer,” which carries with it the expectation of chemotherapy and radiation and a great deal more suffering than we endured.
And yet, we both wish we hadn’t had so many medical professionals dance around our diagnosis with vague veils of avoidance. “Is it cancer?” Tatyana asked. “Yes, but it’s the best type of cancer you can have,” she was told.
My friend Kerry wrote a book about her experience as a patient with a brain tumor and she told me that my piece inspired her to finish the last chapter. One of Tatyana’s doctors has asked her to contribute to a new support website for kids with skin diseases.
It would seem that almost everyone not only has a story, but also wants to tell it. And in this age of social media and electronic real-time news, it would seem that almost everyone can. I wonder: Will a growing chorus of patient voices inspire the medical community to join in?