New Directions

Dear Readers,

Your author is en route to Chicago to attend the annual meeting of the American Society of Clinical Oncology. It’s the first time in years I’ll be there, and I’m looking forward to it – the next phase of my career, a blend of academics and new writing.

So it seems a fitting time to put this blog on hiatus. Not to worry, as always, I’ll pay attention to the conference proceedings. I’ll take extensive notes on cancer science and drugs. And I’ll see some old friends in the Windy City.

You will hear from me again soon!

To all of my readers, and especially those who have commented here or otherwise connected through Medical Lessons over the years, I say thank you. I’ve learned a lot, and not just about medicine.

Moving forward,


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Get Cancer. Lose Your Job?


Let’s start with this fact: If you are employed and get a breast cancer diagnosis, it’s less likely you’ll be working at your job four years later. A newly-published study of women in Los Angeles and Detroit found that among women less than 65 years with limited-stage breast cancer, 76 percent had a paying job at the time of their diagnosis. Based on follow-up surveys of the same women four years later, the number employed was reduced by 30 percent. That’s a huge drop.

The study was just published on-line in the Cancer Journal. The authors, including a corresponding and lead author in a department of radiation oncology at the University of Michigan, make a point in the paper’s title, Impact of Adjuvant Chemotherapy on Long-Term Employment of Survivors of Early-Stage Breast Cancer, that chemotherapy may be to blame. And there’s some truth in this. Chemotherapy causes fatigue and, occasionally lasting problems such as neuropathy, heart weakness and chemobrain that might limit or impair a person’s capacity to work effectively.

On the other hand, the likelihood of developing many of those chemo-related effects depend on the dose and regimen selected. Radiation, often, causes fatigue, and – when administered to the chest, can cause premature heart disease (atherosclerosis) and lung problems, besides secondary tumors as a late consequence of treatment. It happens, though, that hormonal treatments, like Tamoxifen, can cause chemobrain too.

As someone trained to give chemotherapy, I’ll point out that none of these options for adjuvant treatment (what’s given to patients with limited disease to lessen the likelihood of recurrence) is a walk in the park. Each bears the potential for short and long-term toxicity. So I don’t blame chemotherapy in particular, although the study authors emphasized that as a culprit based on a low-level statistical correlation.

More broadly –

This news comes as no surprise. I know too well how women at work may be treated after a breast cancer diagnosis. I am privy to the stories of dozens of women who say they were unduly turned down for promotions or good assignments, opportunities…Upon returning to work, if they took time off (which some didn’t, such as your author, during her BC treatment), they  – if they take pride in their work – find themselves missing their own doctors’ appointments, exercise and other aspects of survivorship care, just to “prove” that they’re still valuable to their office, team, business.

The harsh reality is that people who have had cancer treatment are sometimes perceived as a burden on a working group: a consultant who can’t travel quite so much, a sales rep who looks less beautiful, a nurse who has to take an occasional half-day off for a check-up. Some bosses worry, although you’d be hard-pressed to find this in writing, that an employee who had cancer treatment may suffer a recurrence, and so she can’t be counted on – no matter how capable and motivated she may be – to lead a fellowship program, or to complete an ambitious project.

What would help is for doctors to guide patients with more nuanced advice, to avoid over-treatment. And patients should ask their physicians, based on their circumstances, for the least therapy that makes sense based on the size and molecular details of their tumor, to avoid long-term toxicity. And for employers to treat their workers who have illness – and not just breast cancer – as potentially valuable workers, contributors, over the long haul.


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A Film and Story-Telling Festival Focuses on Disability

Recently I had the opportunity to attend part of the New York ReelAbilities Film Festival. The 6th annual event in New York involved all five boroughs, but was based primarily at Manhattan’s Jewish Community Center. The program featured a dizzying spectrum of disability perspectives and concerns on film. It also included talks, photographs, parties and story-telling in presented by The Moth.

RealAbilities NY Disabilities Film Festival, 2014

RealAbilities NY Disabilities Film Festival, 2014

I liked everything about this festival. Perhaps the best aspect is that individuals with all kinds of issues can come, in real life, and meet other people with similar kinds of concerns. And so might their parents, or spouses and others who want to know, to gain a better sense of the experiences of people with varied physical forms. I don’t know that I could have imagined this kind of event happening, when I was a child or a young doctor.

For this post, I’ll stick to “the Moth” presentations, which numbered five. My instincts tell me not to declare favorites, so I’ll just provide a tidbit about each of the stories:

The first speaker walked onto the stage with just a bit of guidance. He was young, blind, handsome and funny. He spoke of growing up in a suburb. He was assigned chores and minded those. When in his early 20s, he signed up to participate in  a program that involved cleaning on Coney Island, the people in charge tried to keep him standing at the edge of the project, to not let him help out in a meaningful  way. He felt marginalized. By speaking with the other participants, gradually he entered the workspace. He got to get his hands dirty, doing grunt work with the rest of the crew. Happiness ensued.

Next, a dark-haired, smiling woman who has aphasia – difficulty speaking, casually stood as she told her story. Her name is Yvonne Honigburg, and she advocates for the National Aphasia Association. She described growing up with a sometimes secretive mother, of learning she was adopted, and of searching for her biological mother. Eventually the three met in a restaurant in New Haven, CT. Upon meeting Yvonne’s natural mother, the adoptive mother said something surprising. It ended well.

A woman in a wheelchair delivered the third, marvelous story. Millie Gonzalez has long curly reddish hair. She wore a sequined, shiny top and spoke of how she has always loved to dance. Evidently she has spina bifida, and after years of dancing with crutches, as a child and in high school, she’s learned to dance in a wheelchair. A while back she attended a previous ReelAbilities festival and saw the film Musical Chairs. After the event, upon trusting a man, perhaps the film director, he “twirled” her in the air, or something like that. Her heart stopped, momentarily, for the thrill of it all. It was very romantic. After that, she’s gone belly-dancing and advocating for people with disabilities.

The fourth speaker told of a moving story of her life with severe kidney disease and impaired vision. When she was a child, and the doctors finally explained to her what was wrong, she felt a sense of relief, knowing at least that there was an explanation for what she was experiencing. After some dark times, and dialysis, she received a kidney from her mother. Still, she lacked self-esteem, and hibernated. She spoke openly and vulnerably, about what led her to see the value of living. #uplifting

The final speaker walked on stage and, after a few minutes, mentioned that she had a prosthetic arm. She’d spent most of her childhood, adolescence and college years trying to hide her deformity. She didn’t want to be perceived as defective. In becoming a mother, she realized that her child had certain expectations….I cried, just a bit.

Seriously, you should listen to the Moth to find out what happened. And next year, or in your city, check out the ReelAbilities Film Festival.

No favorites. Each story is distinctly beautiful, and instructive (like people…)

All for a while,


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Why Not Tweet When You Are In the Hospital and Not Feeling Well?

A question surfaced last month is if – or why – patients should tweet, blog, or otherwise share details of their circumstances on the Internet. The discussion focused on the “case” of a friend, a thoughtful and bright woman who enthusiastically and frequently, perhaps assertively, shares her experiences as a person who lives and receives care for metastatic breast cancer. Apart from the brouhaha surrounding some vicious and factually incorrect columns by a married pair of journalists about her blog and Tweeting – the story might and I think should generate a broader discussion among journalists and doctors about patients’ privacy, social media and “openness” in the hospital setting.

This post may seem un-PC, especially at first. But my purpose is to consider the ramifications of patients using social media while getting treatment. I intend this as a conversation-starter:

From the physician’s side 

If I were a doctor making rounds now in a hospital, let’s say an oncology floor, and I knew that any of the patients might be tweeting – or could tweet – pretty much anything about his or her situation, I’d be uncomfortable about it, enough so that it might interfere with my giving the best care possible. Maybe I’d get over it, kind of the way reality TV show participants say they start to forget about being on camera all the time. But I’m not sure I’d be so honest with patients as I was, or open, as without a certain barrier, a “privacy setting,” between us (the patient and me) and the outside world.

In a (figuratively) glass hospital, I’d be more careful with my words and gestures. On the surface, that sounds like a good thing. Transparency breeds best behavior. But it’d be harder to give a patient a hug, to sneak-deliver a bunch of abandoned flowers in a vase from the utility room, to sit down in a chair at a patient’s bedside and watch the Olympics on TV for three minutes, say, while other patients (and colleagues) were waiting for me, to give a post-op patient with parched lips an ice chip, to break a minor rule. A barrier separating the patient and doctor from the world, the medical team, case managers…can strengthen the bond, and trust, between a doctor and a sick patient.

The loss of privacy can diminish the relationship. Many hospitals have rules on patients’ use of social media, and for doctors, too. But surely the future will bring new ways to break those rules. There will be greater connectedness, not less.

Now, a smart and careful patient might say to her doctors, as I do to mine: “Don’t worry, I won’t write about you on the Internet.” And I don’t, except occasionally and vaguely. Generous words, a genuinely positive “review” might cause trouble down the road. Because if something goes wrong later, and the doctor feels exposed… Stuff happens, and you may not be able to control it.

Why this matters is that if doctors don’t trust the patients they’re giving care to, the care won’t be as kind, or “good” in the sense of quality. To practice well, most doctors need to know, to be confident, that their patients will be careful and cautious about sharing information. In recent decades, doctors’ trust in their patients has eroded, not just from threats of malpractice, but by the plain fact that patients shift from doctor to doctor based on insurance and other changes, and, increasingly, receive care from medical teams and what some call patients’ “homes.”

From the patient’s side –

Being isolated in a hospital room leaves you vulnerable to doctors and other caregivers who may be inappropriate, rude and even abusive. This is especially true if you’re in pain, unable to walk or can’t speak. You might consider that having the capacity to call for help – to Tweet – is empowering.  Health care #911, and very public!

But the main benefit, as I see it, is that patients with similar conditions can find one another and provide support, one to each other. When I was in the hospital for scoliosis surgery as a teenager, for instance, I think I would have benefited from connections to other kids going through the same. When I had my breast cancer treatment, maybe I would have found comfort in the support of – and being “with,” while in the hospital – knowing other women who were going through it, too.

Being sick and alone is scary. Having instant contact to the outside world can be a lifeline.

Split decision?  #nojudgement

Ideas welcome!

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For MLK Day – On Giving Blood, and Maybe Being the Match

January is National Blood Donor Month. For those who can give, it’s never too late; the need is year-round.

A few years back, I wrote on the value of donating blood, as many will do today to honor the birthday of Dr. Martin Luther King, Jr. When I was practicing hematology I wasn’t aware of this practice, which now seems integrated with nationwide MLK National Day of Service events. The Orlando Sentinel published an article linking blood donation with MLK on January 14 1988.

Here are some resources for people who’d like to know more about giving blood:

Give Your Blood To Save a Life, Poster (American National Red Cross), U.S. National Archives

Give Your Blood To Save a Life, Poster (American National Red Cross), U.S. National Archives

The American Red Cross provides information on when and where to donate blood, as well as helpful instruction on the process of giving for first-time donors.

The AABB, formerly the American Association of Blood Banks, covers transfusions and related therapies.

America’s Blood Centers – a large network of non-profit community blood centers.

The New York Blood Center – a terrific local resource for my neighbors, a pioneer in blood banking and resources for patients worldwide.

For those who’d consider bone marrow donation, the National Marrow Donor Program helps patients with leukemia and other conditions find matching bone marrow donors.  The agency provides, also, financial assistance to some who can’t afford needed transplants.

Today, I learned that Robin Roberts, the GMA anchor who has been through breast cancer treatment and, subsequently, a bone marrow transplant for a rare blood disorder (MDS), has launched a public service campaign to encourage blood and marrow donors. Each of us can only do what we can. That she is alive and putting her name behind the drive, telling her audience what they can might to do to aid others, is heartening.

As someone who has benefited from the generosity of healthy donors, and the kindness of strangers among those, thank you!

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Reading Lisa

image, and link, to Lisa's blog

flower image, from Lisa Bonchek Adams

For this week, I refer my readers to the generous, telling blog of Lisa Bonchek Adams, a woman who is 44 years old and lives with Stage 4 breast cancer. She has spent the past week holding firm at the center of a media-storm, while hospitalized. 

I know Lisa and admire her for her candor. It takes courage to share what it’s like, as she does – good days and bad. Yes, her story is imperfect. But so is everyone’s.

I see beauty in her story, unedited.

Lisa’s blog and tweets are not filtered by a journalist, nor structured by a doctor to fit into an HPI or EHR. She writes directly to her readers. If you insist on literature, you might consider Lisa’s work as a splintered and intensely personal longform narrative.

The blog is kind of like a thick, old-style paper chart of a complex patient. A doctor, in trying to understand a person’s course, might read all of it, or flip through most, or just cut to the chase and scan a few recent lines and lab values. It takes time to pour through a detailed account, to appreciate what is really going on, to understand what the notes reflect.

It could be that there is no “answer,” that Lisa’s story is, plainly, what it is – about her life. Not everything needs be explained. Why peg a person’s condition? Except maybe if you’re a doctor and she’s asking you for treatment or advice. 

Lisa is not asking for a diagnosis. She has a team of doctors. She is just letting you know what it’s like to be in her circumstances, in case you’re interested, or care.

I learn a lot from Lisa. I am glad that she is alive and tweeting, as she chooses.

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A Message for Doctors, on Christmas in the Hospital

When I was 14 years old, I spent Christmas as a patient in the hospital. While that circumstance might seem sad, it wasn’t my holiday to celebrate. Rather, it was scary, because my usual surgeon was away on vacation, and my care was in the hands of strangers.

Years later, after medical school, I spent more than a dozen Christmases working. Maybe more. Because I am Jewish, it seemed appropriate for me to work on that date. The main drawback, as I matured in my physician-ship, was that my sons were home from school; it was a day I might spend with them. But as holidays go, it was one when I didn’t mind working. I was glad to do it.

So here’s the thing for doctors on call on holidays like today or Thanksgiving, or Easter or Eid, or the Jewish New Year – here’s what I’d say to the young doctors, residents and fellows, if I were still making rounds, covering more patients than usual, and eager to get home:

Please don’t race through rounds. Be a little more generous than usual with your time, thoughts and words. Yes, your family wants you to get home today. But the people for whom you’ve accepted responsibility, to take care of them today, need you too.

Patients who are in the hospital over the holidays aren’t there by choice. They may need extra examination and a bit of hand-holding, besides greater diligence at a time of year when the on-call schedule “turns” more frequently. It’s when some doctors may be loathe to call a cardiology consult for an abnormal cardiogram, or an infectious disease specialist to evaluate fevers…Patients need the doctor who’s there, who may be less supported than usual, with fewer nurses or physician assistants than usual, to notice if they need a change in their meds, or if they’re short of breath, or in pain.

My thoughts are with people who are sick in the hospital today, the patients and their families, and the nurses, doctors and support staff. And everyone else –

Cheers, salud! Merry Christmas to those who celebrate it! And thank you to the doctors and nurses for being there when patients need you.

I wish all my readers a good holiday and healthy 2014,


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What to do about a Curved Spine? On Data, ‘BodyCast’ and New Directions

I don’t often write about scoliosis, a health problem that’s been with me since age 6. The problem is that my spine is twisted, S-shaped, and – without the support of steel rods, titanium cages between lower vertebrae, seven or so bolts and a screw into my hip – I couldn’t walk or stand up much, if at all.

Recently, the New England Journal of Medicine published an article on a rare, NIH-funded study evaluating treatment of this condition in adolescents. It’s an odd, semi-randomized trial: the researchers intended to randomize the patients to wear a back brace for at least 18 hours each day, or not. Not surprisingly, they had trouble enrolling young patients from over 1000 deemed  eligible; few were willing to be randomized to wear the brace, or not. In the end, they studied 242 patients. The endpoint was whether the kids who wore braces were less likely to need surgery.

How do you know if a child needs surgery for scoliosis? The authors state that “Curves larger than 50 degrees are associated with a high risk of continued worsening throughout adulthood and thus usually indicate the need for surgery,” based a 1983 report. The date of that limited old paper – and a greater point, I might add – is how little evidence there is for patients with scoliosis and their parents to guide treatment decisions.

An anatomical illustration from the 1921 German edition of Anatomie des Menschen

Anatomical illustration from the 1921 German edition of Anatomie des Menschen (wikimedia entry)

The NIH provides some information on scoliosis, although there’s not much on how common is the problem in moderate and severe forms. Significant scoliosis is far more common in girls than in boys. A lot of kids have a slight curvature, if you look hard for it, and many older adults develop curving of their spines. But the frank, debilitating kinds of deformity caused by an S-shaped spine at a young age, which limits the capacity of the heart and lungs, besides other problems, cosmetics aside, if of unknown frequency. And there’s little by way of hard data to distinguish among braces, surgical methods, duration of casting and other issues. I learned today that the USPSTF doesn’t recommend routine screening for this condition.

The NEJM study stopped early, because the results became clear. Wearing the brace significantly reduced the chances of an adolescent spine’s progression to severe curvature, from 72 percent down to 48 percent. So for the next friend of a friend or colleague’s acquaintance who calls me and asks what it was like to wear a Milwaukee brace as a child, and then to have surgery, I might refer them to this article, which supports the “bracing of adolescents” – quite a summary of 4+ years of my life, before the (brief) traction, surgery and casting.

Surgery for scoliosis is a much lesser and safer procedure than it used to be, but it’s nothing to choose if you can avoid it. When I was 14 years old, the orthopedist told us my chances of dying during the procedure were approximately 0.5 percent. I was good enough at math to comprehend it, and by then had been to enough doctors’ offices to know that he was probably making it seem better than it was. Besides, what were the non-fatal and long-term complications of the surgery?  I didn’t ask, but I’ve learned: Many –

Jump to yesterday evening, when by chance I got a front-row seat at Bodycast, an autobiographical performance art or “talk,” with bits of dance, music and neat images by Suzanne Bocanegra. The artist, now in her fifties, has scoliosis and wore a cast for two years as an adolescent in Texas. Frances McDormand, one of my favorite actresses, delivered the layered, piercing work. As Bocanegra mentioned, some people fetishize casting and bracing and putting women in traction and stuff like that, which is truly sick.

"Bodycast," by the artist Suzanne Bocanegra, at BAM

“Bodycast,” by the artist Suzanne Bocanegra, at BAM

I liked the show, and I’d be interested to see more of Bocanegra’s work. One of the threads was making order out of curves, art out of irregularities…She’s into tartans, and plaster casts, and art history, and classical notions of beauty. What she represented in Bodycast, as I saw it, was somehow putting different aspects of one’s life in order, and interweaving them, including the flaws.

Life is curved, usually, and maybe it’s better that way. Perhaps that was the Bocanegra’s point, or dot, as she might illustrate it.

And on that note, I’ll lead my readers to my new website: What’s next?

I thank the artist for her work.


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“The Dallas Buyers Club” Takes on AIDS, Peer Patients, and Not Taking “No” for An Answer

If you’re a doctor or nurse of a certain age, the Dallas Buyers Club will jog memories. If you’re among those who lost a loved one or friend to AIDS maybe 20 or 30 years ago, or not, this new film might wrench your heart. Anyone watching will be pushed to think hard about drug development today, the slow pace of progress for metastatic breast cancer and other young life-takers, and the FDA’s role in sanctioning, or blocking, treatments for adults with terminal illness.

Dallas Buyers Club image from FOCUS films copy

scene from “the Dallas Buyers Club” (Focus Films)

The movie draws loosely on the story of Ron Woodroof, a Texan rodeo rider who developed AIDS around 1985. A rail-thin Matthew McConaughey, who says he dropped nearly 50 pounds for this role, somehow nails the look of young, HIV-infected men who were filing into hospitals and clinics back then. After absorbing his diagnosis and said prognosis of 30 days to live, the cowboy teams up with Rayon, a (fictitious) transgender woman portrayed, memorably, by Jared Ledo. Together with an oddball group of sympathetic accomplices, the pair set up shop, to procure and distribute unapproved medications the doctors won’t prescribe. Jennifer Garner plays a sympathetic young physician, Dr. Eva Saks, who in the movie crosses lines a bit incredibly, too personally in the second half, to help the AIDS patients and commiserate. But otherwise the film is spot-on. It captures the desperation, determination and clinging together of people, then, affected by what was incurable disease.

One question that sticks with me, as a physician reflecting on the story, is how unclear it is which drugs, exactly, helped the protagonist. Woodroof, as depicted in the film, briefly takes AZT and then moves on to all kinds of substances including DDC (Zalcitabine) from Mexico, interferon of unknown purity or dose from Japan, protein supplements and more. Through a mix of stuff he lives until 1992, seven years beyond what the doctors first told him to expect. An old-school clinical trialist, almost any of my former teachers, and anyone who appreciates evidence-based medicine (as I do, for the record) would know and state and insist that you can’t draw any conclusions based on what happened to the movie’s protagonist, or Woodroof in real life.

On the other hand, clinical trials are painfully slow. Published trials can be flawed. Even if they’re randomized and well-analyzed, the findings can be hard to interpret when it comes to a single patient’s course and well-being. What’s a dying man to do?

Another relevant point, for people affected by almost any health problem, is the extent to which the patients took charge in the Dallas Buyers Club. They found and shared information about their disease independently of their physicians. The image of an AIDS patient using an old computer in a library, looking up articles about his condition, anticipates patient networks of which there are hundreds, on-line and in communities, today.

I came away from this movie feeling optimistic. Because when I was a student, 30 years ago, I wouldn’t have believed that a man afflicted by AIDS, as McConaughey portrays, could now, likely, live for a long time.

#hope, and happy Thanksgiving,


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Why I Like the (Absurd) Dancing in the OR Video

Last Thursday I was struck by a video of a woman dancing in the O.R. The Huffington Post lifestyle editor called it awesome. “Deb’s Flash Mob” lasts 6 minutes and 14 seconds. The scene takes place in an ordinary-appearing operating room. The song, Get Me Bodied, by Beyoncé, beats familiarly, throughout. And flash mobs, well, they’ve happened in all kinds of places.

What I’d never seen before – what’s news – is a furiously lively woman dancing with doctors, nurses and other others in the operating suite where she would soon undergo a bilateral mastectomy. She, the patient, is shaking and grooving. She’s clad in two hospital gowns, one flipped backwards (for modesty; a trick those of us who’ve been there know), a cap and hospital ID bracelets. An IV part dangles from the crook of one arm. Despite the circumstances, it looks like Deb’s having fun, smiling and, in the end – as her surgery nears, she’s thanking and hugging people who appear to be her friends, dressed in scrubs and adorned with health care accessories like stethoscopes.

Deb’s OR Flash Mob

As of this post, Deb’s OR Flash Mob has been viewed over 6.3 million times on YouTube. Not everyone, including a breast cancer patient and blogger I respect, loved the clip. (And I must admit it gets a bit long; at 3 minutes in, I was ready to concentrate, again, on what I’d been writing.) There are a hundred things wrong with this video, not the least of which is that if every patient were to ask for a dance party before surgery, the hospitals would lose money and (more importantly) precious operating room time. It’s a completely unreasonable, and, maybe, selfish thing to do.

But the dance party is humanizing. I’d go so far as to suggest it adds value to the Deb’s health care experience, and, remotely, might make a good outcome more likely. Why’s that? Because if the nurses and doctors, including the anesthesiologists who take care of the patient during surgery are reminded of her personality – her spirit, or spark, or whatever you want to call it – before they start monitoring and cutting, they are more likely to pay attention, to take care of her body, of which she’s relinquished control, than if they simply perceive her as a physical human container of a tumor with flesh, bones, a beating heart, lungs and other organs.

It turns out the patient is a physician, Dr. Deborah Cohan. She’s an obstetrician and AIDS researcher at UCSF. I can only infer that her position was a factor in the medical center’s indulging her request for a dance party before her mastectomy. On a Caring Bridge site, she offers few details of her circumstances. What all of us who’ve been there, after that kind of surgery, know is that the recovery isn’t always easy. Drains and all that. The dance party was a week ago tomorrow, early in the morning before the bilateral mastectomies. I hope that the patient is recovering well.

What Deb did, and I thank her for this, is offer an extreme example of patient-centered care. Among other things, she did everything possible to assure that the people caring for her perceive her as a human being who dances and enjoys music.

In reality, many and probably most breast cancer (and other) patients can barely get their legitimate questions answered about their surgery or treatment options, or have sufficient time with doctors to discuss those thoroughly. If only every doctor would “see” each patient as a vibrant human, that might help. Each of us deserves a dance party equivalent, or at least a good conversation and attention from the people we trust with our medical care.


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