I’m delighted to share an essay I wrote for the Journal of Participatory Medicine that was released February 28, 2014. This is an open-access journal, so I’m offering both the original story and the link. This story is deeply personal, and I debated not going public with it.
I think the best way to tackle issues about health care is to face them head-on, which is why I’m sharing.
I’ve changed all of the health care professionals’ names in this essay, and I ask that you please respect their privacy as well. My goal is not punitive; it’s to educate. Feel free to make comments.
But You Said I Wouldn’t Need Radiation
Summary: Participatory care for breast cancer patients requires doctors to do more than simply tell patients about their diagnoses. It’s about communicating effectively so that patients can comprehend complex medical information, make informed treatment decisions, and feel hopeful about the future. After being diagnosed with breast cancer, the average patient consults with as many as six different physicians about a care plan. The most effective practitioners use patient-centered communication to encourage patients to participate in their care and to reduce hopelessness. Breast cancer survivor and communication skills trainer Stephanie Roberson Barnard tackles this important subject with a personal essay comparing post-mastectomy appointments with two different physicians. Both physicians interpreted the same results, but the first doctor’s communication style left Stephanie anxious and bereft, while the second doctor’s communication style helped her feel informed and hopeful.
Keywords: Breast cancer, patient-centered communication, doctor-patient communication, patient participation.
Citation: Barnard SR. But you said i wouldn’t need radiation. J Participat Med. 2014 Feb 28; 6:e4.
Published: February 28, 2014.
Competing Interests: The author has declared that no competing interests exist.
Disclaimer: The names of providers have been changed for this article.
The Waiting Game
When my husband, David, and I arrive at the General Surgeon Dr. Alberts’s office for our appointment, the waiting room is packed with patients. Groups of families sit huddled together, praying for good news. We swap crumpled magazines, and smile when we come across one we haven’t already read.
David and I are exhausted; neither one of us has slept a full night in over a month. Less than a week ago, I sported a faded blue hospital gown, black sutures running across my flat chest, and IV needles emerging from the top of both hands.
“Fever of Unknown Origin”
Twelve days ago, my plastic surgeon , Dr. Black, admitted me to the hospital with a “fever of unknown origin” just a few hours after removing my last two mastectomy drain tubes. That fever came from a bacterial infection in both breasts caused by Staphylococcus aureus.
Staph infections can be difficult to eradicate, so he ordered a truckload of tests and consulted an infectious disease specialist, who ordered treatment with intravenous vancomycin, a high powered antibiotic. When I continued to deteriorate, he performed emergency surgery to remove the tainted tissue expanders and prevent septic shock. I stayed in the hospital a week, sleeping in spurts between interruptions of staff changing my IVs and taking my vital signs.
Now I feel overwhelmed and hopeless. Walking the 30 feet from the car to the entrance of Dr. Alberts’s office felt like a marathon. I’m worried about the next stage of my treatment, and whether or not I’ll be able to have breast reconstruction. I’m afraid the staph infection will colonize in my nasal passages and linger forever. I’m sick of being sick.
Being this worn down and broken is unusual for me. Prior to being diagnosed with breast cancer, I rode my bike at least three times a week, hauled my preteen daughters all over town, and balanced volunteer, household, and freelance work with the ease of a professional plate spinner. Now I can’t even go to the grocery store because I wouldn’t be able to drive myself there, much less push the cart. As I sit in the waiting room watching people come and go, I feel my emotions gurgling under the surface, challenging me not to cry, waiting for me to crack so they can escape.
Digesting Bad News
Dr. Alberts was the poor soul who had to tell me I had cancer a month ago. I felt sorry for him when he broke the news because he couldn’t seem to look me in the eyes, and he barely opened his mouth when he spoke. I knew it was hard for him, yet I was annoyed that he didn’t communicate clearly. David aptly summarized our interaction saying: “I know these guys treat patients who are sicker than you, but when they’re talking with us, you should be the most important person at that moment.”
After a whirlwind consultation with my care team—a radiation oncologist, medical oncologist, general surgeon and plastic surgeon—to discuss my diagnosis and family history, I had the radical surgery every woman fears: bilateral mastectomies. Dr. Alberts removed my breasts and cut out the sentinel lymph node under my left arm, and Dr. Black inserted the tissue expanders for reconstruction. During the operation, a pathologist looked at the lymph node under a microscope and determined that it was cancer-free. The next day, Dr. Alberts delivered the good news. Then he left for vacation, and David and I went home to recover.
Back for More
Nurse Sandy finally calls us back to the treatment room where we wait another 30 minutes before Dr. Alberts arrives and drops a bomb. When he comes into the room, he dismisses the conversation about the staph infection and jumps right into tumor analysis.
“Well the margins on your tumor were .03 millimeters,” he says. “The guidelines say that they should be at least .01, so I think you may need radiation.” What? That doesn’t even make sense. Isn’t .03 greater than .01? Plus, everyone said if the lymph node was clear, I wouldn’t need radiation. You told me the lymph node was clear! This story-changing business is ticking me off.
“I thought if the lymph node was clear, I wouldn’t have to do radiation,” I say.
Dr. Alberts leans back on the gray laminate treatment room cabinets and crosses his arms and feet, revealing his barren ankles. He’s wearing Kermit the Frog green scrubs and brown leather Dansko clogs without socks. P-U! I’ll bet those shoes are stinky!
“Not necessarily,” he says . He continues to talk in circles about tumor margins and new literature, without giving a specific study or journal citation. I feel like I’m drowning in data. Just when I manage a gulp of air, he hits me with another wave of information. I wish he’d pause and ask me if I understand. My head starts spinning. I seriously think it might literally rotate around my neck like the little girl in the book, The Exorcist. I can’t believe he’s telling us this! Haven’t we received enough bad news lately?
I manage to spit out a question: “What about reconstruction?” One of the main reasons I chose the radical path of bilateral mastectomies instead of a much simpler lumpectomy on the breast with cancer, was to avoid radiation and keep my tissue healthy so I could have my breasts reconstructed. And he knows this! It was part of The Plan. Is he going mad? I know he’s “the doctor,” but can he show me the literature he mentions?
Despite my brain’s running commentary, I’m unable to formulate any intelligent responses, so I just sit there mute. “What does Dr. Crist think?” asks David.
“I haven’t spoken with her yet,” says Dr. Alberts. Seriously? North Carolina is supposed to be at the forefront of care coordination, yet here stands one of my doctors, who is not an expert on radiation, giving me advice without consulting my radiation oncologist who is!
Dr. Alberts tries to satisfy me with another empty promise: “Well at least you don’t have to have another surgery.”
“Sure I do,” I say. “I’m having reconstruction.” Why is he assuming I want to have a concave chest the rest of my life? I feel defensive yet the problems I have are not my fault.
“Well not immediately,” he responds. Am I really having this debate with a man who is supposed to be helping me? How about a hopeful comment? A little empathy would help me calm down and grasp this information.
Then he launches into chemotherapy advice: “The next step for us will be to put in a central line for chemo.”
“You just said ‘no more surgery,’” I point out. “Liar, liar, pants on fire!” I’m embarrassed to admit I really said this to him. Why am I resorting to playground communication tactics? I used to be so articulate! (In real life I’m a communication skills coach to health care professionals — yes, I see the irony here.) What’s happening to me? I’m spiraling out of control. I feel my nose sting, a sure sign that tears are gathering in my eyes and preparing to fly out.
He laughs congenially and says, “Well it’s out-patient.” This guy is like a pit bull; he doesn’t let go. Can’t he see that I’m upset? I don’t need to hear about another possible procedure today.
After all of this, he still seems to want to get the last word: “If you can’t have reconstruction, you can always wear a prosthetic bra.” What? He goes on to say, “I don’t think prosthetic bras are that bad.” Really? Have you ever worn one? “My mother has one and the breasts feel real.” Excuse me: what exactly does your mother’s prosthetic bra have to do with me? I told you my preference a month ago. I want reconstruction! Just because I had my tissue expanders removed last week, doesn’t mean I’m giving up! Don’t take away the last morsel of hope I’ve been squirreling away.
I’m in complete disbelief. I don’t even know what to say to him, which is a rarity.
Dr Alberts continues to espouse the merits of prosthetic bras. Doesn’t he realize I’m not responding because I’m in shock? I’m using all my energy to muzzle these tears. Please just stop talking. Filling the silence with redundant explanations doesn’t ease the burden of the news.
Falling Into the Hole
I am being treated for depression. My internist helps me manage it with medication and talk therapy. Before I was diagnosed with breast cancer, I had weaned myself off the meds, and kept myself out of the depression pit by exercising and thrusting myself into my work. Now I’m not exercising or working. I’m just spending every penny of my health care reimbursement account and every scrap of hope trying to get back to normal, as if my life will ever be “normal” again. The hardest part of depression is fighting the demon that always shadows bad news. In these moments, I cannot understand why I’m sad, and I want to fix it, but I don’t know how.
When we return home, I take to the bed.
Getting Pulled Out
The next morning David calls the Radiation Oncologist, Dr Crist, who sees me immediately. Her office has a warm vibe and features an aquarium, coffee bar, and board games. Everyone greets me with a smile, knows my name, and treats me kindly. I feel as if they’re really taking care of me, not just pushing me through the system so they can file my insurance. The receptionist confirms that they received the hospital records I requested, and the nurse who takes my vitals empathizes after I share the story about my raging staph infection. When Dr Crist enters the treatment room, she says, “Stephanie, I’m so sorry about your ordeal. You were really sick.”
Finally! A doctor who pays attention to my case and shows empathy for my suffering! I feel the first layer of frustration slowly peeling off. Then, as my story unfolds, I shed the next layer and the next, like pieces of cold winter clothing, damp and laden from being worn in a blizzard. Dr Crist listens intently, making eye contact and smiling gently when I inject bits of ironic humor into my story.
I tell her about the ordeal of experiencing a staph infection, the emergency surgery, and how sad and desperate I feel. I recap the conversation with Dr Alberts: “He said I might need radiation.” “Then he told me I’d probably need chemo.” “He also said that I should avoid reconstruction surgery and just wear a prosthetic bra!” I pause only to take choppy breaths to sustain my story. My eyes begin to water, and I fight my body’s impulse to cry.
Dr Crist takes a moment to process the flurry of information, and says, “I don’t think you need radiation and you might not need chemo.” Really? Whew!
She goes on to explain what the margins mean, quotes the literature, and says she thinks a margin of .03 millimeters is sufficient. “Who’s to say a margin of .06 is any better than .03?” she says. “The protocol is .01. And your margin exceeds that.” Gee, Dr Alberts, thanks for shoving me into the hole yesterday!
Coping With Good News
I’m having trouble accepting the possibility of good news. Bad news has been the norm in my life the past few years. First my dad was diagnosed with breast cancer, then my little sister. Dad and Ainsley both tested positive for the BRAC2 gene mutation, but my older sister and I did not. Dad’s cancer jumped into his other breast and then his lungs, and killed him nine days after my fortieth birthday. I keep waiting for the bad news to arrive because I know it’s coming.
To reassure me, Dr Crist promises to consult two former colleagues, who are radiation oncologists at prestigious medical schools, for their opinions. Then she says I should be well enough to have reconstruction surgery in about six months. She promises to call my medical oncologist to ask him to order an Oncotype DX test, so they can determine the chances for cancer recurrence, and if chemotherapy would be beneficial. Then she smiles and tells me I’m doing great. This is just what I needed.
My visit with Dr Crist takes half the time of the consult with Dr Alberts, yet I feel as if we spent all morning chatting. I leave her office better informed and significantly calmer with a renewed sense of hope. One day at time, I tell myself. I wish all my doctors treated me the way she does.
- Choosing a doctor and hospital. American Cancer Society [website]. Available at: http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/choosing-a-doctor-and-a-hospital. Accessed Sept. 20, 2013. ↩
- Robinson JD, Hoover DR, Venetis MK, Kearney TJ, Street RL. Consultations between patients with breast cancer and surgeons: a pathway from patient-centered communication to reduced hopelessness. J of Clin Onco. Jan. 20, 2013;31(3),351-358. Available at: http://jco.ascopubs.org/content/31/3/351.full?sid=dc6898bb-c19e-434d-a04b-2bff64ff857d. Accessed Nov. 16, 2013. ↩
PS One of the peer reviewers asked if I ended up having radiation, and the answer is “No!” I’m so glad to be well.
Copyright: © 2014 Stephanie Roberson Barnard. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.