About Elaine Schattner, MD

This author has not yet filled in any details.
So far Elaine Schattner, MD has created 333 entries.

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!

Related Posts:

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.

Related Posts:

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.

Related Posts:

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

Related Posts:

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

Related Posts:

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

Related Posts:

“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

Related Posts:

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

Related Posts:

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.

Related Posts:

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

Related Posts:

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.

Related Posts:

A Little Bit of Good? on Dying, Communication, and Breaking Bad

Within the realm of narrative medicine on TV, Breaking Bad took us to a dark and violent place. The devastatingly brutal finale took the protagonist, Walter White – a cancer patient and chemist like no other – where he was destined to go from the start: he died. Walt had, from the first episode, a diagnosis of inoperable lung cancer. And he was human. So there’s no surprise, really.

What made the ending so memorable, besides wrenching, was Walt’s final surrender, to his circumstances. He accepted his impending death and decided, with what hours remained, to do some good. It wasn’t much, but he tracked down former friends and directed them, however forcibly, to provide for his son; he spoke honestly with his wife; he took a bullet.

a scene from the last episode, 'Breaking Bad' on AMC

a scene from the last episode, ‘Breaking Bad’ on AMC

Walt, a school teacher, got turned on to cooking crystal blue methamphetamine. He, a man who in the beginning could barely hold a pistol, became a ruthless killer. He called himself Heisenberg, after the physicist who established a principle of uncertainty. His new line of work led, indirectly, to planes crashing and body parts raining over his neighborhood. As a consequence of Walt’s choices in the fictional TV-years between his 50th and 52nd birthdays, other men’s daughters died, drug dealers died, crime bosses and old people and kids died. His world and home became ruinous. Until the end, he kept saying he was doing it, cooking meth for his family – that he might leave money for his wife, disabled teenage son and infant daughter.

In the end, he couldn’t repair his relationship with his teenage son, who’d idolized him. He couldn’t bring to life his former student and partner’s dead lover. Or resurrect others he’d killed along his strange, calculating and horrifying journey. Walt died in a bloody scene, right along with the professional bad guys, the hit-men he’d hired to get at others.

Someone close to me suggested the ending was “too good” – that Walt’s fit of honesty in an i-dotting finale offers a sense of catharsis, or redemption, that doesn’t follow from the antihero’s trail of heartless decisions. It was unlikely, he said. Unlike Heisenberg.

But I loved it.  A lot. Mostly because in my real life, I’ve seen people nearing death who lacked the courage to contact loved ones, to say a few words that – while insufficient to fix what’s irreparable – might have helped them gain peace of mind, or future solace. On the other side, I’ve seen family members and long-lost  friends afraid to call or visit patients on their death beds, for not knowing what to say, for not being able to set things perfectly right.

Sometimes there’s no way to mend a person or a bad situation. You can’t deny reality. But if you’re still conscious and able to communicate, you may be able to lessen the damage you’ve done, or the pain someone else is experiencing, just a bit.

Related Posts:

A Case for Slower Medicine

A few days ago I met Katy Butler, author of Knocking on Heaven’s Door. Her revealing book about her elderly father’s slow death and her mother’s reaction to that – by learning to question doctors and, ultimately, choosing “less” – is a cautionary tale of too much medicine. The prose is elegant, and daughter’s point of view, graspable.Knocking on Heaven's Door

What emerges, through Butler’s voice about her parents’ ordeal, is anger. She tells of the pacemaker that was placed in her father’s heart. It kept him alive through multiple strokes and progressive debility. Her father’s protracted illness became a burden to her aging mother, who cared for her husband through thick and thin. Butler minds the costs of the procedure and doctors who, with seemingly little contemplation, inserted the device and billed for it. When her mother, in her eighties, became weak with heart valve problems, she opted not to have surgery. That was a triumph, Butler suggests – that her mother didn’t let the doctors take her heart, too.

And so she writes. There’s value in this intensely personal story. Because every day in hospitals patients receive treatments they don’t want, that they wouldn’t have selected if they had understood in advance what the consequences would or could be. Too many people, especially the elderly, die after they’ve had futile, intensive or just plainly aggressive care. Butler points to the pitfalls of a system that pays doctors to do procedures rather than to communicate.

Anger is an understandable reaction to a system that dehumanizes us (patients), that treats human bodies as containers of billable ailments and broken parts. I get that. But most of the many doctors I know go about their daily work with good intention – to heal. Plus, there’s a danger of underselling, or not choosing, care that could extend life, with good quality, for years or decades.

It’s not easy to reconcile the positions of over-treated patients and over-worked doctors. Some say the answer is in better medical education, in programs like narrative medicine, in patients’ gaining knowledge and asking more questions, or in revamping doctors’ payment incentives. I don’t see an easy solution from the doctors’ side, except for what’s obvious:  practicing physicians need time to think, to contemplate the purpose of what they’re advising in each patient’s case. They should be paid for intellectual and communicative (non-PR) efforts. And they should learn, or be given enough minutes in each visit assigned, to hear, listen and respond to patients’ concerns.

The author of Knocking on Heaven’s Door, Katy Butler, mentioned that she’s eager to give grand rounds, to speak before doctors including cardiologists. She’d love to tell and teach them, and us, a thing or two.

Related Posts:

Seeing ZocDoc, And Listening To A Panel On Improving Health Care

A few evenings ago, I visited ZocDoc. The youthful company, seemingly approaching middle age among startups that began in 2007, looks to be thriving. ZocDoc keeps its headquarter downtown in a loft-like, mainly open, SoHo space replete with a ping-pong table, open kitchen and mock street signs pointing (abstractly) to concepts like “Make Work Fun” and “Patients First.” The vibe amongst the crowd – a hundred or so by my crude estimate: a mix of doctors and entrepreneurs, a few journalists, insurance executives and investors, along with some ZocDoc employees – was strictly positive.

According to its website*, ZocDoc is:

… a free service that allows patients to find a nearby doctor or dentist who accepts their insurance, see their real-time availability, and instantly book an appointment via ZocDoc.com or ZocDoc’s free apps for iPhone or Android.

Basically it’s a small-but-not-tiny, growing health IT company that provides an on-line way, like an app, for people to find doctors who accept their insurance and have available time slots. (Think of OpenTable, but for health care?) Since 2007, ZocDoc has expanded. The company, with some 450 employees, claims over 2.5 million users monthly in over 1,800 cities.* Its business model includes that doctors, dentists and possibly other provider-types, pay an annual fee to participate ($300 per month, an employee told me). Since it started, ZocDoc has received significant press and gained prominent investors like Goldman Sachs and Jeff Bezos. It’s won awards as a top-notch place to work. Kudos!

The main event was a panel discussion of a dry-sounding subject:  “Improving Healthcare: The Public and Private Sectors’ Shared Responsibility.” ZocDoc’s founder Chief Operating Officer, Dr. Oliver Kharraz, introduced a formidable panel of speakers, in this order: Senator Tom Daschle, Dr. Brad Weinberg, of Blueprint Health, Senator and Dr. Bill Frist, Rich Fernandez, of the Boston-based Steward Medical Group and Dr. Amanda Parsons, of the NYC Dept. of Health and Mental Hygiene.

Dr. Kharraz opened with a question on how technology and medical startups, like ZocDoc, will fare in the context of Obamacare and upcoming, uncertain changes in the health care landscape. Daschle was first to answer, and he did so by congratulating the company for its talent and the passion it brings to a turbulent, transformative health care environment. A fit-looking Frist, a former heart surgeon, spoke enthusiastically on opportunities in the private sector. Other panelists chimed in, with words like “value,” “exciting,” “risk,” “entrepreneurial,” “wellness” and “opportunity.”

No word cloud is needed; we were in one. And it’s hard not to be charmed by the brightness of enthusiastic and eager tech-folks who want to make it easier for people to get to doctors they might need. In theory. The ZocDoc space bore no semblance to any hospital or office where I’ve been a doctor or a patient.

At the end of the discussion, one of the panelists noted the group’s apparent agreement on the terrific-ness of the enterprise. Rather than opening the session up to questions from the audience, we were invited to mingle and ask questions of the speakers. If I’d had the chance, I’d have asked a few:

1. Does ZocDoc help people get well, or is it simply a web-based system for procuring appointments with doctors who sign on?

2. What does ZocDoc offer that another health IT program, or portal, can’t or couldn’t provide?

3. How does ZocDoc help patients who don’t have insurance? (OK, it doesn’t; but that’s not the company’s aim)

4. Sure, ZocDoc has value. It helps a small fraction of the population who might be traveling and for one reason or another need to make a doctor’s appointment without having time to ask around or call in, or prefer to just click for an appointment (as I do for groceries), but…Does ZocDoc improve the quality of health care received?

5. How do you reconcile the money being invested in start-ups like these, which make health care “easier” for a few, with the lack of resources faced by real, nearby NYC hospitals closing?

Keep in mind, my concerns are based in my enthusiasm for technology in health care, and for giving providers, aka doctors, a “shot in the arm” of modern-ness. Enter the 21st Century…But there’s no hands-on a patient, no real medicine here. It’s too clean. I’m not convinced the value’s true.

*all links accessed 9/19/13

addendum, 9/20: a ZocDoc representative has informed me by email that the fee for providers is based on an annual contract priced at about $300/month, and so I have adjusted the post accordingly. (I’d originally stated that the fee was approximately $300 per year, based on my recollection of what an employee told me during the event.) – ES

Related Posts:

Visiting an Exhibit on Early AIDS at the New York Historical Society

School’s back in session. With fall approaching, your author has resumed teaching and attending lectures. Today I had the chance to visit the New-York Historical Society where an exhibit, AIDS in New York: The First Five Years is winding down. The display closes in two days.

A group advocating AIDS research marches down Fifth Avenue in June, 1983. (Mario Suriani/AP) - NYHS image

A group advocating AIDS research marches down Fifth Avenue in June, 1983. (M. Suriani/AP image) NYHS 

The opening scene, by the first room’s entrance, is breathtaking in a way. There’s a huge picture of men, countless, basking in the sun on a Hudson pier. The men looked relaxed, comfortable and healthy – blissfully unaware of what lies ahead. The exhibit takes you through the late 70’s club scene, with just a few pictures of that, and then moves to confusing and odd reports of unusual infections in homosexual men, intravenous drug addicts, hemophiliacs and Haitians. The show moves on into the early 80’s, when science steps in slowly, and most politicians keep away.

What’s clear is that most doctors didn’t know what was going on. The young men weren’t sure either. There were rumors but also credible denials about a disease affecting the community. Gradually, the city’s Department of Health and CDC started tracking the problem. There were protests, and activists, and friends helping friends to die. There was no therapy back then, except to temper some of the infections and treat the once-rare cancers we were seeing with strange frequency.

I had the fortune of walking through the exhibit today among a group of suburban high school students – kids who were born after the invention of anti-retroviral therapy. Their questions – some simple and others intense, and the relatively young guide’s recounting of her experiences during the early AIDS years, made me realize how crucial is this history. It was a terrifying health problem, then.

Yes, the historical society’s exhibit is neat and tidy. I remember, well, caring for young people who died, hopelessly. The gravity of the epidemic isn’t captured. But it’s a worthwhile review, nonetheless – especially for its bits on low-end media, like typed bulletins from the early Gay Men’s Health Crisis and early posters on safe sex. Those frank messages provided the only information some people at risk received about the emerging disease. The display includes a few passages and images having to do with patients helping patients. That was the best part.

Related Posts:

Summer Reading: Island Practice, About A Rare Physician on Nantucket

Summer seems the right time for reading Island Practice, a book about a surgeon who lives and works on Nantucket. This engaging work profiles a craggy, eccentric and trusted doctor who, by circumstance and availability, takes care of many people on the island with all kinds of ailments – physical, psychological, minor and life-threatening. The story, now available in paperback, offers a window into the year-round experience of living in a small offshore community. Island Practice

The book probes the relationships formed when a doctor is immersed in his community. There are few secrets. As reported by the detail-oriented Pam Belluck, a NYT journalist, Dr. Tim Lepore arrived on Nantucket in early 1983 with his wife and children. Over time, the people who live there got to know his politics, habits, pet interests and political views. As described, the Harvard-educated, Tufts-trained Lepore is a gun-collecting libertarian. He practices medicine with old-fashioned attention to each patient, variable billing and a conscience that makes it hard for him to leave the island. Lepore takes pride in his work, knows the limits of his knowledge and surgical skills, and cares. He treats famous Democrats with summer homes, businessmen stopping by on yachts, or hermits hiding out in well-furnished holes in the island’s woods.

It’s refreshing to read a story of a physician who practices on his own terms, who manages to set his viewpoints apart from his work. That’s how I was trained to practice medicine, and to what I aspired in my practice, years back – to treat each person the same and carefully, no matter what their background and opinions. So unlike the Florida doctor who, during the health care debate was reported to have posted a sign on his door that Obama supporters should seek care elsewhere. And so much like the Palestinian surgeon portrayed in a film I saw recently, the Attack, who worked to heal wounded Israeli trauma patients. Good medical care is apolitical.

I suspect many of my readers – patients and physicians – would enjoy this worthwhile book and perspective on an unusual doctor’s life.

And on that note, I will close out this blog for summer.

Safe travels and health, to all, ES

Related Posts:

Good News from SCOTUS on Gene Patents, But Questions Remain

Today the U.S. Supreme Court issued a unanimous decision on the Myriad Patent case, having to do with the company’s ownership of BRCA-1 and BRCA-2 gene sequences. The main opinion, authored by Justice Thomas, says this:

“A naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated, but cDNA is patent eligible because it is not naturally occurring.

At first glance, this is terrific news for patients world-wide. It means is that no company, university, other entity or individual can patent human genes.

Keep in mind – the case doesn’t just apply to BRCA and evaluating a person’s risk for breast and ovarian cancers. Rather, there are hundreds of human genes implicated in cancer that are potential targets for treatment, that might be evaluated, and thousands linked to other diseases. The decision continues:

“Myriad did not create or alter either the genetic information encoded in the BCRA1 and BCRA2 genes or the genetic structure of the DNA. It found an important and useful gene, but groundbreaking, innovative, or even brilliant discovery does not by itself satisfy the… <patent law>

West façade of U.S. Supreme Court Building. (Franz Jantzen)

West façade, U.S. Supreme Court (Franz Jantzen), gov’t image

What’s clear is that gene sequences, as they occur in human cells, can’t be owned just because they’re found, no matter how important they are. This circumstance should allow other researchers and firms to create cDNA from the natural sequences to develop new (competing and potentially less costly) assays and, even better – do their own work – tantamount to providing “second” and “third” opinions (etc. & n.b. IMO more is better!) research to understand how the genes lead cause disease in some people and might targeted for therapy. Great –

But the decision suggests that many lab-generated complementary DNA (cDNA) strands remain patentable, or up for grabs once created – which may be the reason some biotech stocks have rising values today. I’m neither a lawyer nor an analyst, but I do know from my experience as a researcher that it’s essentially trivial to generate cDNA from a short DNA segment, potentially with a mutation of interest. So how might the cDNA be patented, if anyone who has access to the original genetic sequence might form the cDNA by routine lab methods?

Near the end of the opinion, the justice writes:

“…but the lab technician unquestionably creates something new when cDNA is made. cDNA retains the naturally occurring exons of DNA, but it is distinct from the DNA from which it was derived. As a result, cDNA is not a ‘product of nature’ and is patent eligible under <patent law §101>, except insofar as very short series of DNA may have no intervening introns to remove when creating cDNA. In that situation, a short strand of cDNA may be indistinguishable from natural DNA.

The document clarifies the cDNA issue just slightly:

“It is important to note what is not implicated by this decision. First, there are no method claims before this Court… the processes used by Myriad to isolate DNA were well understood by geneticists at the time of Myriad’s patents ‘were well understood, widely used, and fairly uniform insofar as any scientist engaged in the search for a gene would likely have utilized a similar approach’…

Nor do we consider the patentability of DNA in which the order of the naturally occurring nucleotides has been altered. Scientific alteration of the genetic code presents a different inquiry, and we express no opinion about the application of <patent law §101> to such endeavors.

How I interpret this is that if a researcher generates a short cDNA segment based on a gene, that’s not patentable, but if it’s a long strand involving lots of clipped introns, that might be patentable.

Taking in all this, which is far from simple, I have a question and a wider point:

What goes unaddressed by the justices is the patentability of cDNA based on common genetic variants in cancer. Those are “naturally occurring” mutations, inasmuch as they arise in humans. But the cDNA generated from those sequences might remain patentable. There are loads of examples in this regard: Consider, for example, the genetic mutations in EGFR, and ALK, that are used in lung cancer diagnosis, treatment decisions and development of new targeted drugs. In the current issue of the New England Journal of Medicine, doctors report on SALL4, a gene that occurs in some liver cancers and might be a good, useful target for therapy in that disease.

The point is that the Supremes – and those would be lawyers – need to know about biology. Justice Scalia, sadly in my view, wrote his own opinion not because he disagreed with the others, but because he felt there was too much science in the decision. From the Scotus Blog today:

“Many readers no doubt will share the view of Justice Antonin Scalia, in a short, separate opinion refusing to join in a section “going into the fine details of molecular biology,” of which he said he had neither knowledge nor belief.  Scalia said he did understand enough …

This scares me, that one of the Justices, our most accomplished lawyers who might make decisions on cloning, and stem cells and who knows what in the future, copped out because he lacks science education – what should be required high school biology in  U.S. schools, public and private – to form an opinion that matters so much.

Related Posts:

On Friends Affected by Cancer, and Environment Oncology

Dear Readers,

Yesterday I learned that a woman I know slightly, a journalist, has Stage 4 lung cancer. Debra Sherman is a reporter for Reuters and began a blog, Cancer in Context.  It’s a moving start of what I hope is a long journey.

What struck me is how Debra describes crossing a line, a bit the way I felt when I found out I had breast cancer. She writes:

I have been writing about medical technology and healthcare for more than a decade. I’ve covered the major medical meetings, including the big one on cancer. I’ve written stories about new cancer drugs and treatments…I wrote those stories objectively and never imagined any would ever apply to me.

She’s shifted from what you might call a “straight” reporter to an i-reporter journalist. And although it’s true that Debra may be less objective than some other writers on the subject, she’s already knowledgeable – through her prior work – on many of the relevant terms and issues. Much of what she knows already, vocabulary included, may allow her to make more informed decisions. It’s possible it may enable her to write in a way that helps readers more than ever.

Earth, from space (NASA image, Wiki-commons)

Earth, from space (NASA image, Wiki-commons

I wish her the best with her column, and with her health ahead.

The bigger issue, of which the story reminds me, is that we’re living among too many young and middle-aged people who have cancer. Every day I read or hear of another case among my neighbors, a friend, a blog. Each reminds me of the need for research, better drugs, and greater knowledge of why so many tumor types – including lung cancer in women who haven’t smoked much, and breast cancer in young women – are on the rise.

The ASCO meeting, where believe me I wish I could be but can’t now, offers a bright picture for targeted drugs, genomics, novel immunotherapy and better data access and analyses through a huge new platform called CancerLinQ, All good. Great, really.

In thinking about each new case in my “world” – if I could pick a field for future investigation that might lead to insight on cancer’s causes and, ultimately, reduce the cancer burden 30 and 50 years from now, I might choose the tiny, under-funded area of environmental oncology

That’s a tough field. Most oncologists want to work with patients. Researchers want to publish papers. Cause-and-effect is hard to demonstrate, especially when most of the data is untenable and you’re up against businesses, politics and people who, understandably, don’t recall precisely what they ingested years ago. But to stop cancer from happening so much, that’s where the money is. IMO, nothing more.

All for this week,

ES

Related Posts:

Questions for ASCO – on Tamoxifen, ATLAS and aTTom

On Sunday in Chicago, oncologists and others at the plenary session of the annual ASCO meeting will be talking about an abstract that matters a lot to women with breast cancer. It’s a study on Tamoxifen that bears on how long women with estrogen-receptor positive (ER+) tumors should take adjuvant hormonal therapy after initial treatment for early-stage BC.

tamoxifen binding an ER receptor (Wikimedia Commons)

tamoxifen binding an ER receptor (Wiki-Commons)

Why this matters so much is that ER+ tumors account for most BC cases. So if you’re a pre-menopausal woman who’s had a tumor removed by surgery, there’s a good chance your doctor will recommend adjuvant (“extra”) treatment with Tamoxifen for 5 or (probably) 10 years. The reasoning behind this recommendation is that the recently-published ATLAS study demonstrated a clear lengthening of life among women with ER+ tumors who took the longer course.

The usual dose of Tamoxifen (Nolvadex) is 20 milligrams per day. The bargain-rate cost is around $9 for a month’s supply GoodRx.com  – so we’re talking just over $110/year x 5 or 10 years. That’s small change as oncology drugs go, although the numbers add up over so many patients affected…

Tamoxifen carries a small but real risk for what most doctors consider side effects, like blood clots and occasional, typically low-grade uterine cancers. The problem with Tamoxifen – which is not so much a risk as a definite consequence of taking this medication – is that it has anti-estrogen effects that many young (and older) women consider undesirable. Already our breasts have been cut. Feeling “feminine” is not trivial. Many don’t want it!

(Mental exercise: imagine hundreds of thousands of men ages 35-55 agreeably accepting a prescription for partial chemical castration to reduce the chances of a tumor recurring, after they’ve already had significant treatment to reduce those odds)

Your author has been in rooms filled with doctors where the overwhelming consensus expressed was that hormonal treatments in women with BC are terrific. Indeed, they extend life and, in some cases – such as those with low Oncotype scores – afford women the option of skipping chemo. But how are they so sure we’d rather take an anti-estrogen for 5-10 years rather than 3-6 months of chemo? Answer: I don’t think anyone knows.

One limitation of the ATLAS study (and as best I can tell the same for aTTom) is that the trial doesn’t distinguish between women who got adjuvant chemo and those who didn’t get chemo. So it’s unclear whether Tamoxifen helps prevent recurrence, or extend life, in women who’ve also received chemotherapy for the disease.

Here are 2 questions for aTTom:

1. How do we know that women with small, node-negative (low risk) tumors who receive chemotherapy, as is standard in many communities, get additional benefit from Tamoxifen after chemo?

2. Should pre-menopausal women with small, ER+ tumors be given a choice between taking chemo or Tamoxifen?

In other words, is there evidence to support the combination – chemo followed by hormonal Rx – as the standard, adjuvant care for women with early-stage, ER+ tumors? or that women prefer hormonal pills over a short course, like 4 cycles, of chemo?

I’m eager to hear about the updated aTTom (adjuvant Tamoxifen Treatment offers more?) findings, to be published and presented on Sunday. I hope my colleagues – doctors, patients, advocates and journalists will ask good questions!

All for now,

ES

Related Posts:

Should People With Health Problems Talk About their Conditions?

Before I became a journalist, I rarely talked about my medical problems. When I was working at the hospital I tried not to mention, or show, the pain I was experiencing in my back to colleagues or even friends. Eventually I had to tell a higher-up about it, because I didn’t take narcotics and the pain became limiting. Rounding was difficult. I needed a chair.

And so I was struck by an essay in today’s Times by a woman who has dystonia, a neurological condition. She writes:

Long after “coming out” to my friends about my diagnosis, I realize now that what’s most important is telling people about the disease. Telling waiters why I’ve brought a special pillow with me to a restaurant; legislative aides who want to know what their bosses can do; and strangers who ask, almost rhetorically, if I am in pain.

The point of the article, as I understand it, is that big-name diseases like cancer get loads of media attention and sympathy from strangers. Relatively few people “get” the suffering of those with rare or less mortifying conditions. This is especially true when there’s no celebrity who speaks, writes, sings or otherwise whines or rails on it. People who don’t feel well want empathy, or at least a bit of consideration.

OK, now I’m going to say what’s hard, and I might regret, but I’m not sure that everyone needs to hear about all of our ailments: Sure, if you’re a writer, you can sort through your medical issues and feel better by expressing yourself, as I sometimes do here, and in principle and occasional reality help others facing similar disorders. And if you’re an employee somewhere and you need to take time off or accommodation for a disability, you may need to talk with your boss about what’s going on.

But do you need explain to the person on the checkout line or, say, a mother organizing a bake sale, why your back hurts? Why you frequent the women’s room? Or why you need a seat on the bus?

I am truly ambivalent about this.

My only way out is to tell you of an error I think I made, in withholding information. After my spine surgery, when I couldn’t sit up without assistance, or raise my arm to brush my teeth, and then eventually was practicing walking with a cane, wearing a brace in warm weather under modest clothing, I deliberately didn’t visit or walk by my place of work. I didn’t want my colleagues to see me looking frail. I wanted to return to work looking strong and standing straight up, as if nothing were wrong inside.

Already I’d had the cancer treatment – surgery and chemo – and they knew about that, although we didn’t speak of it much. Mainly it was women coworkers who visited me when I was hospitalized. That is understandable. Most of my colleagues didn’t know about my back. Not really. A lot of people have back pain, after all. What’s the difference, scoliosis, fusion, a revision, a clot, whatever…Or about my other conditions. It was TMI.

Over time I was becoming a burden to the group and – astonishingly in retrospect, I felt badly about that. I worked harder than most, to compensate for my disability (which I had trouble acknowledging, internally), and that further damaged my health. I sometimes wonder, now, if I had told my colleagues earlier, and let my non-cancerous conditions “show,” would I still be practicing medicine today?

Maybe.

Not everyone wants to hear about it. Or know. Besides, plenty of people have stuff they don’t mention –

“Everything is copy,” is a phrase Nora Ephron learned from her mother. That’s according to her son, Jacob Bernstein, who  detailed some of her final days in the New York Times Magazine. But Ephron kept quite a bit to herself. She was a sharp and successful lady.

Thoughts?

Related Posts:

newsletter software
Get Adobe Flash player