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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Old and New Music, on Dying to Give Birth

Recently I saw Inside Llewyn Davis, the new Coen brothers’ film about a folksinger in Greenwich Village. The moving, fictional story takes place in the early 1960s. The protagonist, handsomely portrayed by Oscar Isaac, can’t quite make it as a musician. He roams from one friend’s apartment to another, never quite sure where he’ll go next. There’s a lot you might explore, intellectually, about his journey, a cat named Ulysses and a trip to a Chicago club called the Gate of Horn.

I liked this sad movie, a lot.

What I nearly missed, though, was the significance of one of the songs, “The Death of Queen Jane.” Fortunately an obstetrician-gynecologist and neighbor, Dr. Peggy Polaneczky, reminded me by her post on its relevance to women’s health. The English ballad tells of Jane Seymour, a wife of Henry VIII. She died in October 1537, at less than 30 years of age, days after delivering a male heir. Queen Jane’s labor was prolonged, her death attributed to complications of childbirth.

The actress Carey Mulligan, Inside Llewin Davis

Fast-forward 475 years and a bit more…

In 2012, the WHO reported that approximately 800 women die each day from preventable causes related to pregnancy. That figure translates to over 300,000 unnecessary deaths each year, worldwide. Pregnancy-related deaths declined sharply in the United States and most of the world in the 20th Century. The CDC indicates that U.S. maternal death rates have been on the up since 1987. The reasons for this trend are not established. That some are having children at an older age may be a factor. But most pregnancy-related deaths in occur in young women. The problem is particularly grave among African Americans. Likely contributing risks, from 1987 to 2009, include lacking of access to health care, and having chronic medical conditions like diabetes, hypertension and obesity.

Shifting notes –

The music Inside Llewyn Davis is lovely, haunting. Seeking details on the traditional English folksong, “The Death of Queen Jane,” led me through a different sort of journey. Here’s a link to some information on it from the Mainly Norfolk English Folk and Other Good Music ProjectOn YouTube you can find versions performed by Joan Baez, among others. Wouldn’t you know it, the music of her sometimes lover, Bob Dylan, plays toward the closing of the Coen brothers’ film? Dylan has a song, “Queen Jane Approximately,” that was picked up by the Grateful Dead. The consensus on Wikipedia, though, would suggest that Dylan’s lyrics have nothing to do with the Tudor Queen.

At that point I stopped searching for answers about Jane Seymour’s cut life, whether she was in labor for two or nine days, and the meaning of the song. And I’ll close with this sound clip of “The Death of Queen Jane” from Inside Llewyn Davis, performed by Oscar Isaac. You can catch a fragment of the desperate woman’s plea.

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More on Mammography, Breast Cancer, Misleading Arguments, Emotion and Women’s Health

It’s a holiday week. But when this morning’s paper delivered yet another op-ed by Dr. H. Gilbert Welch, citing (and breaking an embargo on) yet another, misleading and manipulative two-author analysis of breast cancer screening by him and one other scientist, I thought it worth documenting some concerns.

I’ll start by mentioning that Dr. Welch and I seem to agree on one point – that women should have access to information so they might make reasoned decisions about breast cancer screening. He refers, also, to controversy among professionals about the relative benefits and harms of screening mammography. That there is debate is incontrovertible. No argument there.

The problem is that educated, middle-aged women are being nudged, and frightened, or even charmed into not going for mammography. Nudged, by papers like the one in JAMA today, which acknowledges controversy about statistics and then suggests a falsely low range for lives saved per number of women who get screened. Frightened, by headlines that highlight the risks of overdiagnosis, a statistical concept. If a woman finds out she has an early-stage breast tumor, she and her doctor can (and should) actively decide how much therapy she should have based on the molecular subtype of her tumor, stage and other factors. Just because you find a Stage 0 or small tumor by screening, doesn’t mean you have to over-treat it. If medical education were what it should be, there would be little or no overtreatment because doctors would discuss appropriate options with women and not advise them to have too much therapy. And charmed, yes – by the false notion that breast cancer is often nothing to worry about, that in many cases it can be let alone. That it might just disappear.

I am not aware of a single pathology-documented, published case of a breast tumor going away on its own. Yes, there are slow-growing tumors that may not do harm. But those tend to occur in older women. Those cases are, in general, irrelevant to discussions of breast cancer screening in women between the ages of 40 and 60 or so. What matters most in assessing screening benefits is the number of life-years saved, which is potentially huge for women in this age bracket, and quality of life changes due to the intervention, as assessed over decades.

Mammography (Wikimedia image)

Mammography (Wikimedia image)

For today, I’ll point to just a few issues in the JAMA paper. The authors state that among 1000 U.S. women age 50 years who are screened annually for a decade, “490 to 670 will have 1 false alarm.” But as detailed in Table 2 of their paper, it turns out the range for women who undergo false-positive biopsies is far lower: between approximately 50 and 100 per thousand women, depending on the age group and study from which the authors draw the “data.” What that means, according to the numbers they’ve culled from studies of non-specialized radiologists, is that only 1 in 10 women would undergo a breast biopsy, and not have cancer, per decade of screening. So the numbers of false positives involving biopsy are not so high.

Most of the false positives are callbacks for additional imaging. Welch and his colleague talk about frequency and anxiety produced by “false alarms.” They go as far as to cite studies documenting that “anxiety may persist for at least 3 years and produce psychological morbidity…” But if women appreciated the data to support that, in most cases – approximately 85 percent – breast cancer can be removed and metastatic disease avoided, over the long haul, by early detection, most of us, and certain anyone making decisions based on reason, wouldn’t mind the follow-up and worrying about irregularities noted on a screening test. Most of us can handle the emotional aspects, and uncertainty, of screening over the course of a few days. To suggest otherwise is patronizing.

Years ago, breast cancer screening was widely considered an act of empowerment, a way for women to take control of their bodies, and to avoid the disfiguring and sadly lethal effects of late-stage breast cancer, besides the potential need for treatment until the end of life. Now, mammography is more accurate and involves less radiation than ever before. Women might be demanding universal access to better, state-of-the-art facilities, rather than shying away from the test.

As for those women who do get called for needle breast biopsies, I say that’s not such an onerous prospect. What’s key is that the procedure be done under local anesthesia, under imaging (typically ultrasound) guidance in an office by a skilled radiologist. The sample should be reviewed by a well-trained breast pathologist, and molecular studies evaluated in a central lab that routinely runs those kinds of tests.

Finally, in the end of today’s op-ed, Welch suggests that the way to reduce uncertainties about breast cancer screening is to carry out costly and somehow randomized clinical trials to see how much and how often screening is needed to demonstrate a survival benefit. But, as his tone suggests, I suspect he doesn’t really favor investment in those clinical trials.

The fact is, I don’t either, at least not for mammography at this point in the U.S.  As I and others have pointed out, it takes 15 – 20 years of follow-up in a trial to demonstrate that screening and early detection reduce breast cancer deaths. In North America, the availability of mammography correlates with a reduction in mortality from breast cancer by over a third. He and others have attributed improvements in survival to better treatments. I and others would suggest that while therapy has improved quite a bit since 1985, the greatest benefit derives from most women avoiding the need for life-long treatment by having small tumors found and removed before they’ve spread. This applies in over 80 percent of invasive cases. The survival boost is from the combination, with early detection playing a significant (large) role in the equation.

Why I don’t support starting new randomized trials for mammography, besides that they’d be costly and hard to carry out, is that we can’t wait 20 years to know how best and often to screen women. Rather, it would be better to spend those theoretical research dollars in finding how to prevent the disease. If in 20 years breast cancer is less common, as we all hope will be the case, and true positives are rare, screening of the population won’t be needed. (If breast cancer rates do climb, Bayes’ theorem would support screening, because the positive predictive value of the test would, unfortunately, be higher.) Either way, by 2034 the technology would have improved, or we might have a valid alternative to mammography for screening, and so the studies would be, again, out of date.

It would be better to spend what resources we invest in mammography on improving the quality of screening facilities, now, so that women who decide to go for the procedure can, at least, know that it’s being performed with modern equipment and by doctors and technicians who are capable of state-of-the-art procedures involving the lowest level of radiation exposure possible, careful reading of the images, and application of sonography to further examine the appearance of women with dense breasts, when needed.

All for now.

I wish all my readers a happy and healthy 2014,

ES

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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,

ES

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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: elaineschattner.com. What’s next?

I thank the artist for her work.

ES

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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,

ES

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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.

#whyIlikedit

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A Conference on Bioethics and Humanities, and Future Planning

Last week I traveled to Atlanta, Georgia, where the American Society for Bioethics and Humanities (ASBH)* held its annual meeting. Most of a thousand people participated in the four-day conference. The sessions drew a mix of nerdy physicians like me, nurses, professional bioethicists, philosophy professors, a few lawyers, historians and artists.

It was really a lot of fun. Fun, that is, if you’re into subjects like philosophy in medicine, literature in medicine, medicine in literature, ethics in medicine, technology and privacy, justice and parsimony in health care, etc. I hadn’t heard the word “epistemic” so many times since I was in college. I felt young and idealistic, talking seriously about philosophy, as though it matters. (For the record: it does.)  This was, clearly, a medical society meeting unlike others. For instance, an academic named Woods Nash, of the University of Tennessee, gave a talk on David Foster Wallace’s story, “Luckily the Account Representative Knew CPR.”

original cover image (Wikipedia) - link to Random House (publisher)

original cover image (Wikipedia), publisher: Random House 

On the first day, I walked into a provocative plenary talk by Julian Savulescu, an ethicist and Oxford professor. He presented an argument that that using medical tools for the purpose of moral bioenhancement might be a good thing. (If this topic brings to mind A Clockwork Orange, you’re on track. Think also of Huxley’s soma, as a questioner raised.) All very serious. The next day, a packed ballroom of people heard from Amy Gutmann, President of the University of Pennsylvania and Chair of the Presidential Commission for the Study of Bioethical Issues. She spoke about the concept of deliberative democracy, and the value of teaching ethics. Toward the end, she entered into a humorous and seemingly candid discussion of men and women in the workplace, “having it all,” and common sense. “Time is finite,” she mentioned.

I could go on, and list all the lectures and smaller sessions, but this post would get dry. Besides, I couldn’t possibly attend each one, nor can I give all the speakers’ due credit. Some talks were better than others, as meetings necessarily go. But I can’t resist a plug for the presentation by Rosemarie Garland-Thomson, a professor of women’s studies and English at Emory, on perspective and disability. Another favorite had to do with technology and science. David Magnus, of Stanford University, considered whether research accomplished through gamification – a means of crowd-sourcing science – on platforms like FoldIt, EteRNA and EyeWire should be covered by the usual rules for biomedical research. “Are the players scientists?” he asked.

The tone, overall, was intense. Intellectual, brain-stimulating… By contrast to other medical meetings I’ve attended, there was little glitz, scant makeup and limited Wireless. Perhaps the most surprising aspect of the ASBH conference was the distribution of freebies at booths in a display area, where attendees gathered for an opening evening reception and, on other days, breakfasts. Of course it was all minor stuff handed out, like pens and candy, mainly from university departments seeking applicants for fellowships, and academic presses selling books. The most substantive, and useful, gift I received (or “accepted” – a term with greater moral accuracy, from my perspective) was a green umbrella from the Hastings Center – a bioethics stronghold where I’d love to spend some time learning and doing research, in the future.

On Sunday morning, I attended one of the last sessions, on decision aids in bioethics. We lingerers were treated to three terrific talks. I can’t cover them all. So to close this post, I’ll refer to the promising work of Michael Green, a physician and bioethicist at the Penn State College of Medicine. He and colleagues have been developing an on-line decision tool for advanced care planning with grant support from the NIH, the American Cancer Society and elsewhere. The website, MakingYourWishesKnown.com, enables individuals to detail their wishes through an interactive questionnaire. Green and his colleagues collect and publish data on users’ feelings upon using the decision aid. They can measure, for instance, if it gives people a sense of control, or reduces fear, and if patients’ families and doctors find the “outputs” useful. I, for one, intend to try out the MYWK website.

And I do hope to attend another ASBH meeting. Next year’s is planned for October, in San Diego.

All for a while,

ES

*disclosure: I joined the society.

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A Theoretical Note to My Students, On a Breast Cancer Case and Future Learning

Last week my students – who are, necessarily, abstracted here – studied breast cancer. How the course goes is that we meet in a small group and, each week, work through a case by Problem Based Learning. The recent case concerned a woman who, at age 35, noted a small breast lump. Each day we acquired more information about the patient, such as the size and molecular features of her tumor and prognosis. We sorted through her treatment options.

a traditional lecture hall (Wikimedia)

a traditional lecture hall (Wikimedia)

It was a dense subject. Over 4.5 hours we discussed what kind of biopsy she needed – aspirate or core needle? We considered if excision in an operating room is required to establish a breast cancer diagnosis. (rarely) We reviewed breast imaging methods (mammograms, sonograms and MRI) and tumor staging. We covered some pathology techniques including OncotypeDx and Her 2 testing by IHC or FISH. We spoke about risk factors and BRCA testing – how that’s done, what it costs and when it might be indicated. We looked at the molecular biology of Her2 signaling, and how that might be pharmacologically blocked. We considered the nomenclature of LCIS and DCIS, and the concept of overdiagnosis. We talked about the woman’s decisions for surgery (lumpectomy or mastectomy) and sentinel node evaluation. We considered kinds of adjuvant therapy including hormone blockers, chemotherapy combinations, radiation, antibodies including Herceptin, and other treatments she might receive. We spoke about her prognosis and odds of recurrence.

We spent time on the statistical concept of lead-time bias. And more. Medical school isn’t easy.

What I hope for my students, real and in cyberspace, is that they’ll always try to do what’s best for their patients. Sometimes in PBL we use PowerPoint. So here’s a list of three things to keep in mind, on learning – not just about breast cancer, but about all aspects of medicine:

1. Keep studying. Patients want and rely on their doctors to stay up-to-date about medical and scientific knowledge in their field of practice.

2. Keep paying attention, so you’ll hear and recall your patients’ concerns and preferences, and offer care that’s mindful of their goals and values.

3. Keep thinking, constantly – how the data applies to the person, an individual, the real patient you’re trying to help.

Of course you should keep asking good questions, solicit advice from colleagues, be respectful of the people who entrust you with their lives…

The best presentations don’t cover too much ground, so I’ll stop here.

See you in the morning, or next week,

ES

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Birth of the Metastatic Breast Cancer Alliance

This week marks 11 years since my breast cancer diagnosis. My feelings are mixed. On the one hand, I’m keenly aware, and constantly appreciative, of the fortune of being alive and, as far as I know (knock on virtual wood), free of the disease. That’s great, of course, but I’m lucky – so far at least, still vying not to be cast off by some strange turn of statistical, informed roulette. I can’t help but think, especially today, of my countless BC “sisters” with metastatic disease.

October 13 is Metastatic Breast Cancer Awareness Day. In 2009, the U.S. Congress voted to designate this day for attention to the particular needs of people with metastatic breast cancer (MBC). Although it’s been unofficial since that year, the day has been adopted by several breast cancer agencies as a time to rally in support the cause – and needed research – for people affected by MBC.  For people who are living with MBC, the immediate goals are not so much to prevent breast cancer, or necessarily to cure it, but to find better treatments so they can live longer and fuller lives.National Metastatic Breast Cancer Awarness Day avatar 180 by 180 px

The number of women living with metastatic breast cancer is unknown. Almost all deaths from the disease occur in people who have advanced or metastatic (Stage 4) cases. This year, some 40,000 women and 400 men will die from breast cancer in the United States. According to the Centers for Disease Control, cancer is the number 1 cause of death in women between the ages of 35 and 64 years. Only lung cancer accounts for more cancer deaths among women. Almost all deaths from breast cancer occur in women with Stage 4 disease. The World Health Organization reports that approximately 458,000 will die from breast cancer this year, around the globe.

These are the kinds of numbers that can be hard for some people to face, or think about too much. Deaths from breast cancer amount to 110 people each day in the U.S., or 1,255 each day, around the globe. I’m thinking of a lecture room of women every day in the U.S., or a train’s worth.., every single day, on average. Hard to envision. But it’s almost impossible not to get the message if just one woman, perhaps at the table over a lunch meeting, tells you about her daily life with relapsed or otherwise metastatic disease, and no end of treatment in sight.

If you break the deaths down by age group, as does the American Cancer Society in its most recent report on Breast Cancer Facts & Figures, you’ll find these numbers in Table 1: over 1,000 women die of breast cancer each year under the age of 40 years; an additional 4,780 die under the age of 50; almost 12,000 die between the ages of 50 and 64; the remainder of BC deaths (nearly  23,000) occur in people age 65 and older. The overwhelming proportion of cases arises in women, although there’s a trend of more cases in men. The median age of a breast cancer diagnosis is 61 years; this is largely a disease of middle-aged women.

Some encouraging news on the research front, besides new drugs in the pipeline and ongoing trials, is the formation of a new, cooperative coalition of breast cancer charities that will work together to address the problem MBC. The new Metastatic Breast Cancer Alliance includes a spectrum of pink and gray agencies, young and old, working together. The main thing is to promote knowledge and research about breast cancer metastases – to reduce formation and growth of metastases, and to treat those affected with better, less toxic meds.

I’m delighted to see an example of BC agencies working together, constructively. Sure, each group has its particular priorities and “personality,” if you will. But we all want to end misunderstanding, and we all hope to improve the lives of people living with Stage 4 disease. Breast cancer is not “easy.” It’s serious and life-destroying. The more research and scientific attention that we devote to men and women with metastatic breast cancer, the more likely will be an extension of their survival, and improved quality of what lives they’ve living, now and hopefully in the future.

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