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Out of the Mouths of Babes: A Physician Discusses Her Cancer Diagnosis With Her Two Young Children


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The ASCO Post is pleased to reproduce installments of the Art of Oncology as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays. To read more, visit jco.org.

 

In medical school, I learned a five-step model on how to deliver bad news to a patient. I still fall back on this method, time and again, in my primary care clinic; I have even used it when giving really tough feedback to a learner who is struggling in some aspect of performance. But I honestly never thought I would be applying these steps to my own children—breaking the news that mom has breast cancer.

In 2016, as a practicing internist, I found a lump while doing a breast self-exam in the shower. I knew that something wasn’t quite right; I was not all that surprised when the mammogram showed a suspicious finding. My first one, actually, at 44 years of age; I had not started screening yet, uncertain of the evidence to support mammography at my age. Now, it’s been 1 week since the biopsy returned results positive for cancer; I have had my appointments with surgery and oncology and am starting to get a better sense of the plan. It seems like now is the time to let my children in on the situation, but, naturally, I am feeling nervous.

I seek advice from several friends who are physicians and also parents themselves; I get some helpful suggestions. “Tell them just enough information, and not too much; let them ask the questions; I’m sure they will surprise you.” My radiology colleague who was diagnosed with metastatic colon cancer at age 50—yes, on the first screening colonoscopy—told me to involve their teachers at school and to be blunt, honest, and direct. Her kids were older, though, teenagers; what about Sam and Lydia, at the tender ages of 8 and 11? I talk it over with my husband, an architect, who thinks I should lead the discussion and maybe appropriately so; we both reason that I have the background medical knowledge and also the training in this particular skill set that would, we hoped, come in handy.

An Opportunity to Talk

The opportunity to have the talk arose on a Thursday evening, right after parent-teacher conferences. As part of Sam’s fifth-grade conference, he was given an assignment to write about what he is learning, what he enjoys most, and what his goals are for the next quarter. I had just seen this document; it was meant to prompt the discussion for those 15 minutes of time with his teacher. On this, he had written “The Cell” as one of his most enjoyable learning topics. Aha. This might be a good way to open the conversation. I called them both into the kitchen; I am sure they thought this was going to be some sort of debrief about report cards or test scores.

Heather A. Thompson Buum, MD

Heather A. Thompson Buum, MD

I am standing at the counter fixing dinner: shrimp diablo, a spicy tomato sauce with shrimp over pasta. It gets quite a bit of heat from a full two tablespoons of chili paste. My son likes the spice; my daughter typically douses it with parmesan to make it more palatable. “So, parent teacher conferences went well!” I say. I am trying to act casual as I peel the raw shrimp for use in the pasta. Their flimsy crustacean shells and odd-shaped legs fling down into the metal colander as I work while Sam and Lydia sit at the kitchen table. I turn to Sam and ask, “What do you know about the cell?”

“Well, you know, the cell is the building block of the human body. Every part of us is made up of cells.” Indeed, I say, how fascinating. “What do you know about cancer?” I ask. (Step 1: Find out what they know.) Sam says, “Cancer is when cells grow out of control and, like, take over your body and spread and stuff.” Very good, I think. Our education dollars are going somewhere.

“Well, along those lines, I am afraid that your Mom has something to tell you.” (Step 2: Warning shot.) “I found a lump in my breast; my doctors did a biopsy and discovered it is cancer.”

I pause, swallow hard. I had tried not to mince words, but maybe this was too much; I will never forget the looks on their faces. Sam, sitting silent, his pale blue eyes with their long, sandy blond lashes simply widened—visibly widened, and he just froze, staring back at me. Then Lydia, with her beautiful hazel eyes and dark lashes: hers just turned red and immediately filled with tears.

I go on to say, “I know this sounds very frightening, but I am quite fortunate: I found this lump early.” I tell them that I am seeking care at the university, to have the best physicians on board, the A team. I will have surgery to remove it followed by medicine to control it. And I feel fine! This is the best possible scenario! It is a very treatable disease, I say. (Step 3: Share information).

At which point Sam asks, “But is it curable?” Darn it, too smart for his own good. I answer yes, it is potentially curable. “But could it come back?” Wow. Well, I say, that is a very good question; in theory it could come back, but the medicine helps prevent that from happening. Lydia is still shedding tears and asking if my arms and legs feel weak from cancer. I am trying to reassure her; I tell her no: I am still running, I can still go on bike rides with her. Sam says, “Well at least you are able to keep doing what you want to do.” What is this, a future oncologist commenting on functional status? I cannot believe that I am hearing these responses.

“I tell them that it is perfectly normal to feel sad or scared, and that, of course, I do, too, but that I have complete trust in my team of doctors.”
— Heather A. Thompson Buum, MD

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We exchange hugs, talk a bit more; I tell them that it is perfectly normal to feel sad or scared, and that, of course, I do, too, but that I have complete trust in my team of doctors. (Step 4: Respond to their feelings). Eventually, we sit down to eat; I mention during dinner that, if it helps, they can tell their friends at school, and I will speak with the parents or talk to their teachers if they would like them to know. (Step 5: Plan the follow through). Later, before bed, we all pray together about it.

Two Different Responses

But during the following days, Sam pretty much clams up about the topic; he doesn’t mention it, doesn’t tell his friends, doesn’t need me to talk with his teacher. Lydia, though, tells her two best friends, and they tell two friends, and so on. She informs not only her current third-grade teacher but her beloved second-grade teacher as well. She is an artsy, creative girl who loves to draw; she and her classmates design a colorful get-well card for me at school. Later, I did find out that Sam was keeping a journal and wrote a few entries about the cancer diagnosis. I was glad to hear this, because writing can be extremely therapeutic. It was interesting and a bit heartwarming to see how each of them processed the information; neither way was better or worse, just different.

In fact, after the initial panic, Lydia suddenly shifts gears and becomes almost my home visiting nurse. Every day, she wants to know how I am feeling: Is there any pain, have I eaten enough today, have I gotten any exercise, when are my other tests coming back? Along a similar vein, she actually wants to feel my lump. I am really conflicted about that; what should I do? Am I going to warp an 8-year-old girl for the rest of her life? This is pretty scary stuff. I recall my early denial, when I kept feeling this lump for several days, hoping it would somehow miraculously disappear; maybe it was just a fluid-filled cyst or something. I kept palpating to see if it was really there until I finally made the call to the clinic.

“Children overhear more conversations around this house than I think they do. My 8-year-old is asking about cancer staging.”
— Heather A. Thompson Buum, MD

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Eventually I decide, well, why not. It might help to have some sort of tangible explanation of what is going on. She presses in where I had originally felt it; it’s quite superficial, at 1 o’clock as they say, just above my bra line, fairly obvious. After the biopsy, there was a bit of swelling, and now it seems bigger than when I originally discovered it (or is that my imagination?). She does feel it, right away, and makes a perfect face: a cross between a frown and an expression of disgust, best described simply as “eeeww.”

I couldn’t agree more. I tell her, “It’s yucky, it’s gross, now let’s get rid of it.” On Tuesday, April 26, to be precise.

On that day, before leaving the house, I explain to Sam and Lydia that it should be a same-day operation unless something unexpected happens; I wanted to prepare them in case I ended up admitted to the hospital. But surgery went smoothly, and, when I walked through the front door later that afternoon, that was yet another look on their faces I will never forget. Sitting on the couch with our nanny, they leapt to their feet, wearing expressions of sheer joy, happiness, relief, and even surprise that I felt pretty good and had minimal pain. During recovery, Lydia became my home visiting nurse once again. She wanted to look at the incision, check the drain output, assist with the dressing changes. I couldn’t help but wonder if these experiences would have any influence in terms of a potential career path down the road.

Questions About the Future

In the weeks afterward, more questions. As I tuck Lydia in for the night, sitting on the edge of her bed between a menagerie of stuffed animals and a pile of books, suddenly she asks, “What if I get breast cancer? And what if it’s not stage I but stage IV?” After I swallow hard and take a deep breath, I think, wow, children overhear more conversations around this house than I think they do. My 8-year-old is asking about cancer staging, for God’s sake!

“Well,” I say, not really sure how to answer. “Just to be certain, you will have x-rays to look for this ahead of time, even younger than me.” By my calculation, at age 34. “You mean magnetic resonance imaging (MRI)? I don’t want to have an MRI!” she says. Whoa. Again, those big ears overheard me describe how loud and confining the machine felt. “Well, yes, probably an MRI. Or by then, some newfangled high-tech total-body scan that can evaluate for any cancer, anywhere in the body!”

For a moment, the physician in me took over; I went on to discuss how many advances have been made in the earlier diagnosis and treatment of many types of cancer, breast cancer included. I was also, by this point, able to reassure her about my negative genetic testing; there is no hereditary component, best we can tell. Relaying this information did seem to visibly calm her; but, once again, I think of the five steps, and I am reminded: Respond to their feelings. I shift the conversation toward that, instead, and validate her concerns, the fear, the anxiety surrounding my diagnosis. I share with her how I have been coping with it, myself: music, writing, exercise.

‘Today Was Good’

Many months later, approaching my 12-month follow-up appointment, we talk about the significance of that date—1-year cancer free—and Lydia even coins a new term for it: “cancer-versary.” It has turned into something we want to celebrate now as a family instead of fear or dread. Sam even let me read the journal entry he wrote 1 year ago on that date, April 26. In typical teenage-boy fashion, it was brief, direct, and to the point. “4/26/16. (Log). Tuesday. Today I practiced my play instead of having English class. And…my Mom is cured of cancer! Today was good.”

Indeed. In retrospect, I can honestly say that day was good. Reading those simple yet profound words, I was reminded of the poet’s phrase: Hope springs eternal in the human breast. Yes, even in the hearts and minds of young children. I will keep this important point in mind the next time I am called upon to deliver bad news to a patient. There might be an additional element in breaking bad news: hope, hopefulness, the need to share something positive. Because even the darkest situations can have an element of hope; there is always something we can do, even if it extends life but does not cure or simply helps relieve pain and suffering.

Sharing Lessons Learned

More than 2 years after my diagnosis, I am once again reminded of the complexity of breaking bad news to children. Seeing one of my long-time patients in clinic, I notice that he is visibly stressed; he then relays to me that his wife was just diagnosed with metastatic lung cancer despite never having smoked a day in her life. After more discussion, when I express empathy, and more therapeutic listening, he suddenly asks: How do we tell the kids?

“I might be able to use my experience to benefit my patients: other moms and dads, and other children, even if I never get to meet them.”
— Heather A. Thompson Buum, MD

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After I pause and swallow hard, yet again, I ponder—how much should I share? I mention several resources, including some helpful Websites and two books written on the subject. After I leave the exam room, I reflect on my own struggles to tell Sam and Lydia. Looking back, that was possibly the most difficult bad news I had to deliver because of the emotional impact on those I love. But it also taught me the importance of involving family, even young children, in the conversations early; it also reminded me about how intuitive and resilient children can be. Out of the mouths of babes…have you ordained strength (Psalms 8:2).

After more contemplation and wrestling with sharing, I decide that I might be able to use my experience to benefit my patients: other moms and dads, and other children, even if I never get to meet them. I come back to the room with his after-visit summary in one hand and a copy of this essay in the other. 

At the time this article was published in the Journal of Clinical Oncology, Dr. Thompson Buum was practicing at the University of Minnesota, Minneapolis.


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