After the Diagnosis: The Search for a Doctor
August 17th, 2018 will hold a spot in my memory for the rest of my life. That day I received the news I have cancer. After the initial shock wore off and I told loved ones of my diagnosis I stopped, took a deep breath, and cried. It wasn’t a long cry, but it helped me face what I knew would be a long journey to health. We have roles in our family and mine is the person who processes information, researches options and presents a plan. I’m comfortable in this role and prefer to not become emotional. The act of researching, setting up appointments, and mapping out a plan brings me comfort. I scheduled appointments with doctors at a prominent university-based medical research center and with a doctor in my town who was recommended by another doctor. I researched the treatments for my type of cancer and options to mitigate the side effects of the chemotherapy cycles. Once my research was completed I felt I could discuss my treatment and my thoughts on treatment plans with the doctors. I felt confident in my research and my ability to discuss available treatments before each consult. I firmly believe in consulting with two doctors before making any decision especially one as important as this. Curiosity about the doctor, her recommendations, and her bedside manner defeated any fear, anger, or sadness about my diagnosis and meeting with oncologists.
I met with the university-based surgical oncologist first. We discussed treatment options, she spoke with me about the importance of me being comfortable and taking part in the decision-making process. I told her I would be meeting with the medical oncologist based at the university the next week. I signed a release allowing him to speak with the surgical oncologist and finished the appointment feeling confident she and I would have a good doctor-patient relationship.
Two days later I met with the medical oncologist in my town. She walked in the room, called me sweetie, brusquely asked “What happened there” as she pointed to my hands. I was born with several congenital anomalies the most notable being my hands. Her entrance into the room and lack of an introduction made me question her professionalism. The appointment only went downhill after the initial greeting.
I informed her I spoke with a doctor at the university hospital and she became defensive and visibly angry. She demanded the doctor’s name and questioned me about her recommendations regarding my treatment. After outlining the conversation, she bristled and asked if “ That doctor would perform the surgery to remove one of the tumors because surgeons are like dogs and they don’t like to share their territory.” I was shocked by her response, and when she repeated her statement, I was convinced she didn’t misspeak.
I then steered her toward the topic of cold capping. Cold capping is the process of placing a cap on the head which cools the head down to below 32 degrees. The goal is the cool the head enough, so it isn’t warm when chemotherapy is taking place. Chemotherapy drugs seek heat, and the cold cap may help prevent complete hair loss. The FDA has approved one cold cap system for use by those with solid tumors such as breast and ovarian cancer. Cold capping doesn’t guarantee a person will keep all of their hair, but it is a process which, according to those I spoke with who used it, allows a patient to maintain their privacy and dignity. When I asked this doctor about cold capping, she replied: “ That sh*t doesn’t work.” I presented her with the studies showing it does work, the FDA’s findings and approval, and cases shared with me by those who work directly with cancer patients who use(d) the cold cap system. She became belligerent and demanded to know if my colleagues were doctors, dismissed the research findings and called the FDA’s approval “Sh*t because that sh*t doesn’t work.”
The doctor then wanted to know when I would start with her. I gently explained I would be seeking an opinion with a medical oncologist at the university. She huffed and said she needed the name of the doctor so she could speak with him about my treatment. She also wanted to know the name of my surgical oncologist so she could consult with her. At this point, I obligingly gave her both names because I knew she couldn’t speak with them since I did not sign a release at the university or her office for her to discuss my case with anyone. She then turned to me and told me she knew whatever she said wouldn’t matter because “you are going to do whatever you want anyway.” She was right. She patted my shoulder as I left the room and said “Good luck sweetie.”
As I walked out of her office, I looked at the people sitting in the waiting room and wondered if they knew their patient rights, if they questioned her bullying tactics or if they sought a second opinion. I know not everyone can travel an hour like I do to go to a university-based research center for treatment but they do have the right to be treated with respect. This doctor’s condescending tone, unprofessional behavior, and ogrish treatment of a prospective patient was a catalyst for me to help those who are newly diagnosed know their rights, understand the need for second opinions, and learn about the agencies and organizations which provide financial, social, and transportation support. Being diagnosed with a terminal illness is scary. An appointment with a doctor shouldn’t create fear and a loss of control over one’s body or voice.