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.

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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.

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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

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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.

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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

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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.

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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

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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

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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?

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Don’t Judge Her! An Essay on Angelina Jolie, BRCA, Cancer Risk and Informed Decision-Making

Angelina Jolie at Cannes in 2011 (Wikimedia Commons, attribution: Georges Biard)

Angelina Jolie at Cannes in 2011 (Wikimedia Commons, attribution: Georges Biard)

Before this morning, I never wondered what it’s like to walk in Angelina Jolie’s shoes. Like many, I woke up to the news – presented in the form of an op-ed in the NYTimes – that one of the world’s most beautiful and famous women recently had bilateral mastectomies to reduce her risk of developing breast cancer.

It turns out the 37 year old actress carries a BRCA1 mutation, a genetic variant that dramatically ups her risk of developing breast and ovarian cancers. Her mother, Marcheline Bertrand, died of cancer at the age of 56 years. Jolie would have been 31 years old when her mother died.

As Jolie tells it, doctors estimated her risk of developing breast cancer to be 87 percent. As she points out, the risk is different in each woman’s case. As an oncologist-journalist-patient reading her narrative, I can’t help but know that each doctor might offer a different approximation of her chances. It’s likely, from all that Jolie has generously shared of her experience and circumstances, that her odds were high.

“Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness,” Jolie wrote in today’s paper. To take control of her fate, or at least to mitigate her risk as best she could upon consultation with her doctors, she had genetic testing for BRCA and, more recently, decided to undergo mastectomy.

The decision was hers to make, and it’s a tough one. I don’t know what I’d have done if I were 37 years old, if my mother died of cancer and I had a BRCA mutation. There’s no “correct” answer in my book, although some might be sounder than others –

I know physicians who’ve chosen, as did the celebrity, to have mastectomies upon finding out they carry BRCA mutations. And I’ve known “ordinary” women – moms, homemakers, librarians (that’s figurative, I’m just pulling a stereotype) who’ve elected to keep their breasts and take their chances with close monitoring.  I’ve known some women who have, perhaps rashly, chosen to ignore their risk and do nothing at all. At that opposite extreme, a woman might be so afraid, terrified, of finding cancer that she won’t even go to a doctor for a check-up, no less be tested, examined or screened.

What’s great about this piece, and what’s wrong about it, is that it comes from an individual woman. Whether she’s made the right or wrong decision, neither I nor anyone can say for sure. Jolie’s essay reflects the dilemma of any person making a medical choice based on their circumstances, values, test results and what information they’ve been given or otherwise found and interpreted.

How to conclude? Mainly and first, that I wish Ms. Jolie the best and a speedy recovery after surgery. And to thank you, Angelina, for raising this issue in such a candid fashion.

As for the future, Jolie’s decision demonstrates that we need better (and not just more) research, to understand what causes cancer in people who have BRCA mutations and otherwise. My hope is that future women – children now –needn’t resort to, nor even contemplate, such drastic procedures to avoid a potentially lethal condition as is breast cancer today.

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