Summary<\/em><\/strong>: 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.<\/a>[1<\/a>] The most effective practitioners use patient-centered communication to encourage patients to participate in their care and to reduce hopelessness.<\/a>[2<\/a>] 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\u2019s communication style left Stephanie anxious and bereft, while the second doctor\u2019s communication style helped her feel informed and hopeful. When my husband, David, and I arrive at the General Surgeon Dr. Albert\u2019s 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\u2019t already read. <\/p>\n 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. <\/p>\n Twelve days ago, my plastic surgeon , Dr. Black, admitted me to the hospital with a \u201cfever of unknown origin\u201d 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. <\/p>\n 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.<\/p>\n Now I feel overwhelmed and hopeless. Walking the 30 feet from the car to the entrance of Dr. Albert\u2019s office felt like a marathon. I\u2019m worried about the next stage of my treatment, and whether or not I\u2019ll be able to have breast reconstruction. I\u2019m afraid the staph infection will colonize in my nasal passages and linger forever. I\u2019m sick of being sick.<\/p>\n 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\u2019t even go to the grocery store because I wouldn\u2019t 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.<\/p>\n 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\u2019t 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\u2019t communicate clearly. David aptly summarized our interaction saying: \u201cI know these guys treat patients who are sicker than you, but when they\u2019re talking with us, you should be the most important person at that moment.\u201d<\/p>\n After a whirlwind consultation with my care team\u2014a radiation oncologist, medical oncologist, general surgeon and plastic surgeon\u2014to 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.<\/p>\n 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.<\/p>\n \u201cWell the margins on your tumor were .03 millimeters,\u201d he says. \u201cThe guidelines say that they should be at least .01, so I think you may need radiation.\u201d What? That doesn\u2019t even make sense. Isn\u2019t .03 greater than .01? Plus, everyone said if the lymph node was clear, I wouldn\u2019t need radiation. You told me the lymph node was clear! This story-changing business is ticking me off.<\/p>\n \u201cI thought if the lymph node was clear, I wouldn\u2019t have to do radiation,\u201d I say.<\/p>\n Dr. Alberts leans back on the gray laminate treatment room cabinets and crosses his arms and feet, revealing his barren ankles. He\u2019s wearing Kermit the Frog green scrubs and brown leather Dansko clogs without socks. P-U! I\u2019ll bet those shoes are stinky! <\/p>\n \u201cNot necessarily,\u201d 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\u2019m drowning in data. Just when I manage a gulp of air, he hits me with another wave of information. I wish he\u2019d 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\u2019t believe he\u2019s telling us this! Haven\u2019t we received enough bad news lately?<\/p>\n I manage to spit out a question: \u201cWhat about reconstruction?\u201d 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\u2019s \u201cthe doctor,\u201d but can he show me the literature he mentions? <\/p>\n Despite my brain\u2019s running commentary, I\u2019m unable to formulate any intelligent responses, so I just sit there mute. \u201cWhat does Dr. Crist think?” asks David. <\/p>\n \u201cI haven\u2019t spoken with her yet,\u201d 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!<\/p>\n Dr. Alberts tries to satisfy me with another empty promise: \u201cWell at least you don\u2019t have to have another surgery.\u201d <\/p>\n \u201cSure I do,\u201d I say. \u201cI\u2019m having reconstruction.\u201d 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.<\/p>\n \u201cWell not immediately,\u201d 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.<\/p>\n Then he launches into chemotherapy advice: \u201cThe next step for us will be to put in a central line for chemo.\u201d <\/p>\n \u201cYou just said \u2018no more surgery,\u2019\u201d I point out. \u201cLiar, liar, pants on fire!\u201d I\u2019m 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\u2019m a communication skills coach to health care professionals — yes, I see the irony here.) What\u2019s happening to me? I\u2019m spiraling out of control. I feel my nose sting, a sure sign that tears are gathering in my eyes and preparing to fly out.<\/p>\n He laughs congenially and says, \u201cWell it\u2019s out-patient.\u201d This guy is like a pit bull; he doesn\u2019t let go. Can\u2019t he see that I\u2019m upset? I don\u2019t need to hear about another possible procedure today.<\/p>\n After all of this, he still seems to want to get the last word: \u201cIf you can\u2019t have reconstruction, you can always wear a prosthetic bra.\u201d What? He goes on to say, \u201cI don\u2019t think prosthetic bras are that bad.\u201d Really? Have you ever worn one? \u201cMy mother has one and the breasts feel real.\u201d Excuse me: what exactly does your mother\u2019s 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\u2019t mean I\u2019m giving up! Don\u2019t take away the last morsel of hope I\u2019ve been squirreling away.<\/p>\n I\u2019m in complete disbelief. I don\u2019t even know what to say to him, which is a rarity. <\/p>\n Dr Alberts continues to espouse the merits of prosthetic bras. Doesn\u2019t he realize I\u2019m not responding because I\u2019m in shock? I\u2019m using all my energy to muzzle these tears. Please just stop talking. Filling the silence with redundant explanations doesn\u2019t ease the burden of the news.<\/p>\n 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\u2019m not exercising or working. I\u2019m 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 \u201cnormal\u201d again. The hardest part of depression is fighting the demon that always shadows bad news. In these moments, I cannot understand why I\u2019m sad, and I want to fix it, but I don\u2019t know how.<\/p>\n When we return home, I take to the bed.<\/p>\n 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\u2019re 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, \u201cStephanie, I\u2019m so sorry about your ordeal. You were really sick.\u201d<\/p>\n 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.<\/p>\n 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: \u201cHe said I might need radiation.\u201d \u201cThen he told me I\u2019d probably need chemo.\u201d \u201cHe also said that I should avoid reconstruction surgery and just wear a prosthetic bra!\u201d I pause only to take choppy breaths to sustain my story. My eyes begin to water, and I fight my body\u2019s impulse to cry.<\/p>\n Dr Crist takes a moment to process the flurry of information, and says, \u201cI don\u2019t think you need radiation and you might not need chemo.\u201d Really? Whew!<\/p>\n She goes on to explain what the margins mean, quotes the literature, and says she thinks a margin of .03 millimeters is sufficient. \u201cWho\u2019s to say a margin of .06 is any better than .03?\u201d she says. \u201cThe protocol is .01. And your margin exceeds that.\u201d Gee, Dr Alberts, thanks for shoving me into the hole yesterday! <\/p>\n I\u2019m 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\u2019s 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\u2019s coming.<\/p>\n 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\u2019m doing great. This is just what I needed.<\/p>\n 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.<\/p>\n Copyright: <\/em><\/strong>\u00a9 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.<\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" Which physician would you rather have as a patient? Here a breast cancer survivor analyzes the communication styles of two of her doctors — the first left her anxious and bereft, while the second helped her feel informed and hopeful.<\/p>\n","protected":false},"author":312,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","jetpack_post_was_ever_published":false,"footnotes":""},"categories":[6,750],"tags":[115,444,37,77,295,723],"coauthors":[762],"class_list":["post-3363","post","type-post","status-publish","format-standard","hentry","category-narratives","category-vol-6-2014","tag-breast-cancer","tag-doctor-patient-communication","tag-feature","tag-issue","tag-patient-participation","tag-patient-centered-communication"],"yoast_head":"\n
\nKeywords<\/em><\/strong>: Breast cancer, patient-centered communication, doctor-patient communication, patient participation.
\nCitation<\/em><\/strong>: Barnard SR. But you said i wouldn\u2019t need radiation. J Participat Med. 2014 Feb 28; 6:e4.
\nPublished<\/em><\/strong>: February 28, 2014.
\nCompeting Interests<\/em><\/strong>: The author has declared that no competing interests exist.
\nDisclaimer<\/em><\/strong>: The names of providers have been changed for this article.<\/p>\nThe Waiting Game <\/h3>\n
\u201cFever of Unknown Origin\u201d <\/h3>\n
Super Mom <\/h3>\n
Digesting Bad News <\/h3>\n
Back for More <\/h3>\n
Falling Into the Hole <\/h3>\n
Getting Pulled Out <\/h3>\n
Coping With Good News <\/h3>\n
References<\/h3>\n
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